The DD News Blog

Nonprofits benefit from soaring Medicaid costs in New York

2011-12-17T06:59:00.002-05:00

It is always instructive to look at how other states provide services to people with developmental disabilities. At the very least, we may learn what not to do.The New York Times has been investigating the crisis-in-care for people with developmental disabilities in New York and has come across some eye-opening discoveries on how Medicaid money is spent.

This article, Aiding Disabled, Nonprofits Rake in State Money by Russ Buettner, is one of the latest in a series. Community Habilitation is a state home care program that provides Medicaid Home and Community Based Services to people with DD. (Michigan's DD waiver services fall under the Habilitation Supports Waiver. Waiver services can vary from state to state.) According to the article, spending for this program has increased more than 40% over the past three years with much of the benefit going to the nonprofits who provide the services.

In New York, providers determine the services through an individualized plan and are reimbursed on a fee-for-service basis, with the fee negotiated with the state. Over all, providers are reimbursed about $40 per hour to pay for a program with little overhead. Workers, who provide the services in the homes of consumers, are paid only an average of $10 - $15 per hour. Medicare provides similar services to senior citizens, but the median reimbursement rate is $21 per hour.

The nonprofits are the proverbial foxes-guarding-the-hen-house and are apparently using the extra Medicaid dollars to pad executive salaries and build up reserves in their organizations. The state is considering doing away with the fee-for-service reimbursements and revising its incentive system to focus more on quality than quantity of services.

Here is a description of other financial shenanigans by nonprofits in New York.

Media coverage lacking on Michigan's dual eligibles proposal

2011-12-15T23:18:00.000-05:00

Here is an article from Domemagazine.com by John Lindstrom on the state's project to integrate "dual eligibles". These are people who are eligible for both Medicare and Medicaid which makes them elderly and poor, developmentally disabled and poor, mentally ill and poor, or some combination of all of the above. The plan would place their care under a single entity that would manage and finance their medical care, mental health care, and long term care.

Lindstrom points out this issue has tremendous import on the lives of the over 200,000 people affected, but it is receiving almost no coverage in the media. The state was surprised by the reaction it has received from critics. Despite the government's assurance that services will not be taken away and that the state's intent is to improve patient care while decreasing costs, the critics don't believe it.

In addition to the lack of coverage of this issue, despite the large number of people who would be affected by it, the subject is difficult to talk about. It is complex and encumbered by impenetrable jargon.

At least one reporter is attempting to make sense of this:

"What is indisputable though is the genuine worry by recipients and their families that their care will be dramatically and drastically affected by whatever changes are made. The changes the state makes wouldn’t amount to a set of inconveniences. Those changes could trigger a massive change of life for some of these recipients."

Testimony on Dual Eligibles

2011-12-08T21:11:00.004-05:00

December 6, 2011
Jill R. Barker
Ann Arbor, MI

To the Michigan House Appropriations Subcommittee on Community Health

I am the parent of two adult sons with severe developmental disabilities, including severe cerebral palsy and profound intellectual disabilities. I am also president of Friends of the Developmentally Disabled, a Washtenaw County group that provides support and information to families and friends of people with developmental disabilities. Friends of DD is part of ddAdvocates of Michigan, an Internet-based communication network with families and community groups all over the state.

I have strong reservations about Michigan’s proposal to integrate dual eligibles. The lack of consideration for populations whose services are currently managed by the Community Mental Health system could lead to disastrous outcomes. Other state’s have taken a less radical approach to integrating dual eligibles with plans that cause much less disruption to current service arrangements than Michigan’s proposal.

Habilitative mental health services for people with developmental disabilities are non-traditional Medicaid services designed as an alternative to hospitalization or institutionalization. These services can include housing in either licensed or unlicensed settings with varying degrees of support and many specialized services that maintain health, ensure survival, and lead to fulfilling lives in community settings. For people like my sons this care is both necessary and costly.

In the State Proposal that was submitted to the Centers for Medicare and Medicaid last February, the phrase “developmental disabilities” does not appear in the 10-page document. The assumption is that people with DD will be subsumed under Long Term Care that includes senior citizens over the age of 65, a much larger group whose needs are chronically and often tragically underfunded. Combining these populations together and expecting to reduce costs without eliminating services for people with DD and others served by the CMH system is simply not believable.

Where are the savings going to come from, if not from the elimination of services? The Community Mental Health System, though always in need of improvement, already has a managed care system in place for Medicaid-funded specialty services and has done well keeping Medicaid costs under control. Why remove CMH agencies as the managing entity for these special populations and replace them with Medicaid managed-care health plans that have little experience with these populations, especially people with developmental disabilities under 65 years old?

Up to one-third of the people served by the CMH system are dual eligibles and account for up to half the costs of the CMH system. What will be the effects on the CMH system for people who opt out of the state plan and others left in the system? Will it be able to sustain itself under these circumstances and will the expertise and specialization of its employees be unnecessarily lost under this plan?

I worry especially about the loss of local control of decision-making under the state’s proposal. The lack of transparency and accountability of managing entities that have no obligation to include consumers on their governing boards will surely have an effect on the vital role that families now play in assuring the provision of mental health services for their loved-ones. Through their persistence and advocacy, parents and other family members fill in gaps in the service system that allow their DD family members to maintain their health and engage in a meaningful life. Families monitor the care of their loved-ones and establish networks that pass on an enormous wealth of information to people facing problems similar to their own. Relationships with CMH and other community agencies that are fostered by families, can be a check on the service system, making sure that local decisions reflect local priorities and needs, while preventing waste in the system. Most of this is done at no cost to the state. When agencies that local families have to deal with are more remote and less accountable, families become discouraged and their desire and ability to support and improve the system of care is diminished.

In my experience, the most creative solutions to increasing the quality of care without increasing costs to taxpayers comes from local family groups that have marshaled support from local community organizations including churches. For example, in Washtenaw County, the parent-directed Just Us Club serves more than 50 families with a licensed after school childcare program and an activity and respite program for adults with moderate to severe developmental disabilities. Space for the programs is donated by the Washtenaw Intermediate School District and Huron Hills Church in Ann Arbor. Fees to families are kept to a minimum by the parent Board of Directors. Intentional Communities of Washtenaw has been setting up residences for higher functioning adults using “community builders” to assure that DD adults stay engaged in the community with their friends and families. His Eye is on the Sparrow runs a supported living house in Dexter, Michigan, relying on volunteers and families as well as funding through the Community Mental Health agency. Harbor House in Ottawa County for severely disabled adults and many group homes in western Michigan are highly praised by parents and their communities. Encouraging these organizations and following their examples, leads to a higher quality of life for the people they serve.

Congress forgets how to pass a law

2011-12-07T10:59:00.000-05:00

Revisiting Federal regulations on the use of Medicaid Waivers

2011-12-04T22:28:00.004-05:00

Last April, the federal Centers for Medicare and Medicaid Services (CMS) proposed regulations that would restrict the use of Home and Community Based Service Waivers (this includes the Habilitation Supports Waiver for people with developmental disabilities in Michigan) to "prevent the provision of unnecessary or inappropriate care". The proposed regulations would effectively eliminate funding for Home and Community Based Services for many forms of congregate care for people with disabilities or for specialized services provided in group settings for people with specific disabilities. (See my blogposts from May and June 2011 for comments on specific issues raised by the proposed rules.)

There was a huge response to the proposed rules, both pro and con. Final rules have not yet been released by CMS.

According to an article in Disability Scoop, almost a hundred advocacy groups are demanding that CMS release the restrictive rules. CMS says there is no final date for publication of the rules, but they are a priority.

The proposed rules would limit the use of Medicaid Home and Community Based Services waivers to only those settings and services found acceptable by disability advocates who promote an ideology of full inclusion for everyone, regardless of the needs of the disabled person or the wishes of the individual and his or her family. The advocacy groups are aggressively pursuing a course that places them at odds with a significant segment of the population they presume to represent. This is a good time to remind CMS of how these restrictive regulations would affect your family member.

Contacts at Centers for Medicare and Medicaid Services:

There is a new acting director of CMS, Marilyn Tavenner. Her e-mail address is Marilyn.Tavenner@cms.hhs.gov .

Cindy Mann, Director, Center for Medicaid, CHIP, and Survey & Certification, can be contacted at Cynthia.Mann@cms.hhs.gov

Henry Claypool is Director of the Health and Human Services Office on Disability. His e-mail is ODInfo@hhs.gov .

Refer to HCBS rules CMS-2296-P in the subject line of the e-mail.

Here is the letter sent by the National Disability Leadership Alliance.

More information on Michigan Dual Eligibles workgroups

2011-12-03T18:55:00.000-05:00

The "Integrating care for dual eligibles in Michigan" Website has more information on the four workgroups that are making recommendations to the state. Rosters for each group are available along with meeting times and dates, agendas, summaries of meetings, and additional documents and information.

I have been participating in the Workgroup on "Education, Outreach, and Enrollee Protections". It is hard to tell if the workgroups will have much of an impact on the state. The Michigan Department of Community Health has set limits on the topics that are covered by the workgroups, placing the most controversial aspects of the state's plan for dual eligibles out of bounds for discussion: whether Medicaid managed-care plans are the best entities to manage and finance services for dual eligibles, whether allowing consumers to opt-in rather than opt-out of the plan is a better idea, and whether the plan as it has so far been described by the state is worth the partial destruction of the Community Mental Health system.

Other metaphorical elephants in the room: the issue of local control and access that is one feature of the Community Mental Health system that would likely be lost; citizen representation of people directly served by and affected by the system of care that exists in the CMH system but is lacking in the dual eligibles plan; a lack of transparency and access to Medicaid managed-care plans that appear to be the most likely entities to manage services for dual eligibles; managing costs of health plans that pay exorbitant executive salaries; the effects of privatizing mental health services for dual eligibles - an idea that was soundly defeated in the state more than a decade ago; rivalries between groups affected by the plan; different federal mandates for different groups of beneficiaries; and expecting to save money by combining several under-funded groups and transferring funds from a CMH system that has been successful at holding down Medicaid costs to another system that has little experience serving the populations served by CMH.

At the end of each Workgroup meeting there is a time for public comment. The Workgroups meet again on December 13 and 15 in Lansing. After that, the state will put together its plan and release it for public comment. This will be the first time that we see in detail what the state intends to submit to the Centers for Medicare and Medicaid for integrating care of dual eligibles and your comments on the plan will be important.

For background on the dual eligibles plan, see the DD News blog here.

Legislative hearings on Dual Eligibles

2011-12-03T09:35:00.008-05:00

To review this confusing topic, see other posts on Michigan's plan to manage and finance medical and specialty services (mental health services for people with mental illness and developmental disabilities) for people who are eligible for both Medicaid and Medicare.

Subcommittee Hearings:

Appropriations Subcommittees are looking at the possible affects of the Michigan "Integrating Care for Dual Eligibles" plan on appropriations and the state budget.

The following are recommendations from Tom Bird of ddAdvocates of Michigan of things to consider if you want to testify:

If you can attend and testify, the emphasis should be on financial impact:

How this will effect those who choose to "opt out" if there is no workable CMH delivery system left (should the "money follow the person"?)
What will happen if the new plan isn't financially feasable? Will services to the most vulnerable be cut, or will "the most needy" be protected?
If the anticipated (pipe-dream) savings do not occur, will the plan continue, anyway? Who will pay the bill?
What if the Fed Government doesn't have the money to pay for the 400,000-800,000 new Medicaid enrollees? Do we dis-enroll them, or will services to all be dilluted?
What if it actually winds up costing more, not less (as is the experience in Mass and Texas)?
What negative impact on services would the proposed "savings sharing" plan have as a dis-incentive to provide the best array of services? (restrict services to pocket the profits)

You may also choose to discuss ways for the system to save money, such as eliminating the PIHP layer of administrative overhead; normalizing provider contracts and reimbursement rates across CMHs and for comparable service delivery. Recognizing the cost effectiveness of multi-bed settings for those who choose them.

Times and locations of hearings:

House Appropriations Subcommittee on Community Health

Tuesday, December 6, 2011 at 10:30 AM
State Capitol, 3rd floor, Room 352
Agenda: Public testimony on Integrated Care Planning for Dual Eligibles

If you wish to testify, fill out a card before the hearing. Bring enough copies of written testimony for all subcommittee members.
Clerk Phone Number: 517-373-8080
Chair: Representative Matt Lori
Other members: MacGregor (Maj. VC), Agema, Genetski, Tlaib (Min. VC), Bauer

Senate Appropriations Committee Subcommittee on Community Health Department
Chair: John Moolenaar

Thursday, December 8, 2011 at 12:30 PM
Location: Boji Tower, 124 W. Allegan Street, Lansing, MI
Clerk Phone Number: (517) 373-2768
Agenda: Presentation on the impact of the proposed Dual Eligible Waiver on the Department of Community Health Budget

The clerk for the Subcommittee said that a number of groups are lined up to testify and time is limited.

Support for Kids with Autism: Panel discussion in Ann Arbor

2011-11-08T11:51:00.001-05:00

This is an announcement from the Washtenaw County Special Education E-Information Listserv:

Panel Discussion: Support For Kids With Autism

Monday, November 21, 2011

7:00 pm - 8:30 pm

In the multi-purpose room in the downtown library

Ann Arbor District Library

343 S. Fifth Ave.

Ann Arbor, MI

A panel of teacher consultants at Washtenaw Intermediate School District (WISD), including Walter Kwik, Pamela McClure, Marla Sebu and Katrina Stewart, will talk about Autism Spectrum Disorder, what it is and how to help people/children with it in Washtenaw County feel more comfortable and successful in their daily lives. They will also discuss the START project, which gives professionals and parents the knowledge and skills to support individuals with Autism Spectrum Disorder in reaching their greatest potential.

The STatewide Autism Resources and Training (START) project is committed to creating a sustainable structure of support for students with Autism Spectrum Disorders within each region of Michigan by provide training and technical assistance to educators and families that support students on the autism spectrum.

The START project has been in place for 10 years through the funding and support of the Michigan Department of Education, Office of Special Education and Early Intervention Services. The rapid increase in the number of students with ASD entering public schools in Michigan has created a critical need for more in-depth training for educators in the use of evidence based practices. Additionally, the START Project has served a key role in meeting this need through innovative activities such as Regional Collaborative Networks, training and coaching models, and resource material development.

For more information on this event, call the Library at 327-4555 or visit the Website

Ira Lax

Outreach and Neighborhood Services

Washtenaw Library for the Blind & Physically Disabled

Ann Arbor District Library

734-327-8365

Friends of DD newsletters, 2009-2011

2011-11-07T11:48:00.004-05:00

I have posted Friends of DD newsletters from the last two years on Google Docs. You can find them here.

Here are specific news letters that may be of interest because of the topics featured:

Supported living in Milan, MI
St. Louis Center in Chelsea, MI
Our Lady of Providence, Wayne County, MI
Group home in Ypsilanti, MI
Harbor House in Ottawa County, MI
Just Us Club, Ann Arbor, MI
His Eye is on the Sparrow
Community Mental Health Services for DD
Home Help Services
Romulus Athletic Club and Matthaei Botanical Gardens

Friends of the Developmentally Disabled, Washtenaw County, MI

2011-11-07T11:07:00.004-05:00

Friends of the Developmentally Disabled, (aka Friends of DD) began as a group of families of people with developmental disabilities more than 10 years. Initially, our purpose was to support people with DD in local group homes and in the day program at Washtenaw Community Mental Health. We never organized formally, although we once may have elected a treasurer. This turned out to be unnecessary, because we never had any money.

We have managed for a long time without a formal organization, although, at least until recently, we have met regularly, and we have cranked out a newsletter to go along with the (almost monthly) meeting notices. We tend to have family members whose loved-ones are on the more severe end of the range of people with developmental disabilities, but everyone is welcome to attend our meetings and sign up for the newsletter.

When we started, we came up with a set of principles. We rarely refer to this document, but we adhere pretty closely to it. Here it is:

People with developmental disabilities have diverse needs based on the nature and severity of their disabilities, their experiences, and family circumstances.
For people with developmental disabilities who cannot speak for themselves, the best advocate is a parent, other family member, or close friend who is aware of the individual’s needs and cares about the welfare of that individual.
To meet the long-term needs of people with developmental disabilities, a full range of services, programs, and living arrangements, designed to meet their unique needs, must be available and the availability communicated to people with DD and their families.

Our purposes are:

To ensure the availability and delivery of appropriate services to people with developmental disabilities while protecting the rights and preserving the dignity of those individuals.
To provide information so that people with developmental disabilities and their families or friends can advocate for themselves to obtain the services they need.
To communicate with public officials charged with the responsibility for providing services and protecting the rights of the developmentally disabled and to ensure the accountability of public agencies to people with developmental disabilities and the public.

And furthermore, Friends of DD does not dictate to you what is best for your family member or browbeat you into conforming to a particular ideology or belief.

This year, we have not met as often as we have in past years, but I have been sending out more information by e-mail with frequent updates on issues affecting families and people with disabilities. Friends of DD has joined ddAdvocates of Michigan, an Internet-based network of community organizations and family members. The purpose of ddAdvocates is to provide information to families and friends and apprise them of opportunities to comment on local, state, and national policies affecting people with developmental disabilities.

Jill Barker
Friends of DD
Ann Arbor, MI

iPad, iPhone, and iPod apps for special ed students

2011-11-05T21:13:00.002-04:00

I recently talked to a parent whose son was able to order food from a restaurant menu for the first time by himself using an iPad to communicate. Apparently, these new-fangled computer machines do all kinds of amazing things that make communicating and understanding easier for children with learning difficulties.

Through the Website Bridges4Kids, I found a list by Eric Sailer of dozens of apps for iPads, iPhones, and iPods. They teach communication skills, sign language, math and spelling, help with speech problems, provide interactive games and books, help with organization, and many other things. These are available through the iTunes store and have reviews that will help parents determine which apps will be the most suitable to their child's needs.

Dual Eligibles plan hits speed bump in Michigan House Subcommittee

2011-10-31T14:27:00.008-04:00

This is a brief summary of a hearing held on 10/25/11 by the Michigan House Appropriations Subcommittee on Community Health. The hearing was only one hour long and will be continued on Tuesday, 11/1/11, in Room 352 of the Capitol building in Lansing. Subcommittee members are Representatives Matt Lori, (C), Peter MacGregor (Maj. VC), Dave Agema, Bob Genetski, Rashida Tlaib, and Joan Bauer. Contact information for all members of the Michigan House of Representatives can be found here.

*****************************************************

The Michigan House Appropriations Subcommittee on Community Health met last week on October 25th, 2011, to hear testimony on the state's proposal to "integrate" the care of people eligible for both Medicaid and Medicare. Under the state proposal, Medicaid managed care plans would finance and manage the care for dual eligibles.

It was obvious that committee members had heard from constituents about the plan, particularly from the significant population of dual eligibles who receive Medicaid-funded services through the Community Mental Health system. Subcommittee members asked many pointed questions about the role of the CMH system in the proposed plan with implicit and explicit support for the system that has been providing specialty services to people with developmental disabilities, mental illness, and other disabilities for decades.

Lynda Zeller, the Deputy Director of the Michigan Department of Community Health (MDCH), and Steve Fitton, Medicaid Director, presented the state's plan and answered legislators' questions about it..

Steve Fitton stated that the Integration of Dual Eligibles initiative is a top priority for the state. The intent of the initiative is to improve health, improve care, and lower costs. Mr. Fitton seemed to be defending the plan against some of the criticisms that the MDCH has received. He said the state wants stability in the system and to continue "important services". They have no intention to "medicalize" what is not "medical". They hope that by pooling funding they will have collaborative purchasing. Capitation will lead to more flexible funding rather than having funding reserved in "acute" settings. They plan to continue all services.

They are reconsidering parts of the proposal that may not work, including the idea of a single assessment tool and one care coordinator. They may consider the idea or a care coordination team. He said the state has no intention to discontinue non-traditional services. They will continue to offer Habilitation Support Waiver services and behavioral services.

He explained the process for stakeholder involvement of the plan. This began with "key informant" interviews followed by forums with a total of 1,000 participants. There is a Website where anyone can comment at any time. A questionnaire was also available on-line for public comments. Workgroups on a variety of topics will meet in November and December. April 1, 2012 is the target date for submitting the final plan to the federal Centers for Medicare and Medicaid Services (CMS). After that they will put out an RFP that a variety of entities can bid on.

Q & A:

Representative Agema asked, what if you can't save money without cutting services? What is the back-up plan?

Zeller and Fitton said they did not know where they would go with that.

Representative MacGregor asked, will you share the plan with the legislature before you submit it to the feds?

Fitton and Zeller said yes, although we know there has been reluctance to do this. The initial proposal submitted to the CMS claimed that the plan could be implemented administratively and without legislative approval.

Representative MacGregor responded by saying that "yes" was the right answer. He said it is key to review this with the legislature. He also said, they should integrate the services that we do well, referring to CMH services.

Representative Bauer asked, what will be the role of CMH agencies? The proposal should have something in it that deals with the issue of CMH and how to use their talents and relationships. She also said that CMH has kept Medicaid cost increases to 2% per year. We need to keep non-traditional services such as club houses for people with mental illness.

Lynda Zeller said they are working with MACMHB (Michigan Association of Community Mental Health Boards) and will be meeting with them soon. She said that what CMH has not done is preventive care, screening, and focusing on care coordination. [I found this to be a surprising statement. Care coordination, in the sense of making sure consumers get appropriate medical care and treatment is one of the things that CMH does or is supposed to do for consumers.]

Michigan Assisted Living Association

Robert Stein gave testimony urging that the state maintain funding and not compromise quality of care. The state must provide options for consumers to choose from and preserve the quality of the provider network. He supported the possibility of implementing the plan with a phased-in approach.

MALA written testimony can be found here.

Michael Brashears, Executive Director, Ottawa CMH

Dr. Michael Brashears testified about his concern that no actual plan has yet been developed for dual eligibles. He said the MDCH has solicited input on only a handful of issues, but there is no process to present the actual model to stakeholders or to allow review of the plan once it is finished.

He also noted that the participation of so many stakeholders in state forums and other opportunities to comment would not have occurred without the dramatic outreach of CMH agencies that held their own forums and emphasized to consumers the importance of the state’s proposal and their participation in it.

Here are Dr. Brashears' written comments expanding on the idea that stakeholder participation has been limited and that "there is no stated 'plan' or 'methodology' related to Dual Eligible Integration for public review prior to the deadline of submitting a 'plan' to CMS of April 1st, 2012."

In response, Representative MacGregor stated that there should be at least a 30-day public review process of the finalized plan.

Chief Executive Officer for the Southwest Michigan PIHP (Pre-paid Inpatient Health Plan)

The state initiative has a very “narrow focus”.

In 1998, the state carved out behavioral health [mental health services] and combined the 1915 b & c waivers (Home and Community Based Waivers). Services are protected by the carve out.

By law and constitution, the state transferred services to local CMHs from the state. There has been continual transformation of this system and development of a professional workforce.

The hearing was adjourned at 11:30 a.m. and will continue on Tuesday, November 1, 2011 at 10:30 a.m.

Halloween Party

2011-10-24T16:14:00.000-04:00

The Ann Arbor Center for Independent Living is sponsoring a free Halloween Party for youth 14 to 26, with apple bobbing, bingo, pumpkin painting, caramel apples and more.

Costumes encouraged.

Friday, October 28, 2011, 6 - 9 p.m.

RSVP required: Ann Dusbiber Gossage at anna@aacil.org .

Anna Dusbiber Gossage coordinates youth events. Contact her for information and questions on future events.

Michigan Direct-care workers vs. Michigan CEOs and Board Presidents

2011-10-20T21:20:00.002-04:00

A commenter on my last blog entry on Michigan's Direct-care Workforce suggested I check out the compensation for some of the Executive Directors, Board Presidents, and CEOs of provider agencies. The place to find these figures and other information about non-profits is on the Website Guidestar. Registration is free and it gives you access to the IRS Form 990 for the non-profits in their database.

Here is a sampling of what I found:

JOAK American Homes, Inc., in Ann Arbor, Michigan

Mission: "The corporation is set-up to provide residence, treatment and support to children and adults with mental retardation, mental illness, substance abusers and shelter for homeless citizens in various counties in the state of Michigan."
The compensation for Board President Josephine Akunne was $235,680 for 2009. It appears that she was paid an additional $44,000 as President of the Board of four other related non-profits.

Hope Network of Grand Rapids, Michigan

There are several Hope Network non-profits providing services to people with developmental disabilities and mental illness.
President of the Board of Directors Phillip Weaver received compensation from "related organizations" of $200,248.
Five more Board members made over $100,000 apiece.

Progressive Residential Services of New Mexico and Progressive Residential Services of Tennessee, both at the same address in Troy, Michigan, provide services to people with developmental disabilities, mental illness and other disabling conditions.

CEO Everett DeHut was paid $346,196 base compensation for 2009.

Community Living Services, Inc. in Wayne, Michigan provides "care, treatment, housing education, and protection of developmentally disabled children and adults."

Executive Director James Dehem received $189,776 in base compensation for 2009.

As I have said for years, "non-profit" does not mean "no money".

Michigan's Direct-care Workforce

2011-10-19T16:41:00.002-04:00

Since 1997, my son Danny has lived in a licensed group home, where he is taken care of by a variety of caregivers. Because the residents at his group home have severe disabilities and high medical needs, the home is well-staffed. At times, however, the quality of care has suffered because of the inability of the provider managing the house to retain good workers. The job is difficult, demanding, requires a high degree of responsibility, and comes with obscenely low pay. I remember many years ago talking to a full-time house manager and discovering that her daughter qualified for food stamps. I naively thought it was not possible to work full-time and still not have enough money to feed your family.

I do not believe that money is the solution to every problem with providing care to vulnerable people. It is hard to put a price-tag on the qualities that make a person an ideal caregiver, starting with a good heart and a genuine desire to help people in need, but the importance of direct-care workers in the lives of people who depend on them cannot be overstated. The way direct-care workers are treated and compensated for their work is in many respects a reflection of how society values the people they care for.

The Paraprofessional Health Institute or PHI is a national organization that works to improve the lives of direct-care workers who provide essential daily living services and supports to people with disabilities and chronic care needs, including people with developmental disabilities. PHI's fact sheet on Michigan's Direct-Care Workforce demonstrates how far we have to go in valuing the work that direct-care workers do.

According to the fact sheet, Michigan's direct-care workforce, at 156,000 workers, is larger than any other occupational group. Paid caregiving is also among the five fastest-growing occupations in Michigan. Nevertheless, the median hourly wage for personal care aides and home health aides falls below 200% of the poverty level at $10.42/hour, compared to the median hourly wage for all occupations of $16.26/hour. Hourly wages for nursing aides are somewhat higher than for home health aides, but still substantially below the state's median hourly wage.

Over the last ten years, "real wages" for nursing aides, orderlies, and attendants increased by 3 %, but "real wages" for home health aides have stayed the same and wages for personal care aides have fallen. 32% of direct-care workers do not have health insurance compared to 13% of the general population. Part-time work is common.

Over half of personal care aides live in very low-income households as do 40% of nursing and home health aides. 41% rely on some form of public assistance such as food stamps, housing subsidies, or Medicaid.

According to PHI, "Michigan's booming demand for direct-care workers cannot be met without making these jobs more competitive so that they attract enough workers, especially at a time when the state has set goals to offer more long-term supports and services options to elders, their families, and persons living with disabilities."

Here is a state-by-state look at the status of direct-care workers.

Comment period on Michigan "dual eligibles" extended

2011-10-10T10:54:00.001-04:00

The deadline for the Request for Input on Michigan's plan to "integrate" people who are eligible for both Medicaid and Medicare has been extended by one week. The new deadline for response is October 14, 2011. See the Blogpost for October 6, 2011 for detailed information.

In addition, an invitation regarding the formation of work groups for the Integrated Care project for people who are eligible for Medicare and Medicaid has been sent out. Included are charters for the four workgroups and meeting dates.

Here is the link to the Integrated Care Work Group Participation Notice.

Comment on the Michigan plan for "dual eligibles"

2011-10-06T11:43:00.001-04:00

Responses to the Michigan Department of Community Health (MDCH) "Request for Input" on the state's plan for dual eligibles (people who are enrolled in both Medicaid and Medicare) are due by 5 p.m., October 7, 2011.

Here is the link to the full RFI with background information.

Here is where you go to respond online.

This is a document distributed at the Washtenaw Community Health Organization Program Services Committee summarizing the issues and offering points to consider in responding to the RFI.

This is the state's official Website collecting comments on the dual eligibles plan. Comments can also be sent to your state representatives (here they are for Washtenaw County) and other state officials. See other blogposts here for more background and contact information and links to relevant documents.

Meeting on "dual eligibles" in Washtenaw County

2011-10-05T12:19:00.005-04:00

NOTE: The term "dual eligibles" is an awful-sounding label that categorizes people according to their health insurance status. Included in this group are the poorest, sickest, oldest, most disabled, and most vulnerable people imaginable. They are under scrutiny because they cost more than other people to treat and care for. They are among the easiest people to target for "cost savings", because it is so difficult for them and their families to fight back when the supposed savings come at the expense of the services they need to survive. We may have to use the same vocabulary that government agencies use so that we can enter into a discussion about government schemes to balance budgets, but it is our job to put a human face on the "DE's" and not allow government agencies and our legislators to forget who these people are.

Michigan's project on "Integrated Care for Dual Eligibles" applies to people who are fully eligible for all parts of Medicare and all Medicaid benefits. This includes about 204,000 people in Michigan. 40% are either people under 65 who are developmentally disabled or people with Mental Illness who started receiving SSI (Supplemental Security Income for low income people - this also qualifies a person for Medicaid in Michigan) and then later qualified for SSDI (Social Security Disability Insurance).

Medicare, a federal health insurance program, covers most physical care. Medicaid, a joint federal and state program, covers almost all long-term care and specialty mental health services, including people with developmental disabilities.

The State proposal will move all Dual Eligibles (DE’s) into Medicaid. Presumably, private managed-care health plans would finance and manage physical and mental health services for DE’s, even though these managed care plans have little experience with developmentally disabled people under 65 or people with mental illness. There is little competition among private managed care health plans and even less transparency into their operation.

It appears that the proposal would allow the state to redistribute funding to cover more long-term care for seniors at the expense of people with developmental disabilities and mental illness. No one can deny that more support for seniors is needed, especially for those who want care in their own homes or want to move out of nursing homes, but robbing Peter to pay Paul is a poor substitute for an ethically sound policy for serving both seniors and people who are now served by the CMH system who have developmental disabilities and mental illness.

The state legislature, through the appropriations process, has already signed off on assuming there will be savings of $10 million if the plan is accepted by the federal Centers for Medicare and Medicaid Services (CMS). The state wants to begin selecting health plans to cover DE’s by January 2012 and put the plan into effect by April 2012.

It is not necessary for the state to push this proposal through to implementation on such a fast track. The federal CMS expects states to refine and reconsider their initial proposals until the final plans are submitted in April 2012. CMS will approve selected plans submitted to them probably 6 months after that. Other states have submitted proposals that are far more nuanced and do not disrupt existing care arrangements.

The state claimed in its initial proposal that it does not need approval from the legislature and that the executive branch can implement the plan administratively. There is some doubt, however, about the legality of the proposal. There are regulations for Medicare and Medicaid that the plan may violate. There is also Section 400.109f of the Michigan Social Welfare Act that says:

"…Medicaid-covered specialty services and supports shall be managed and delivered by specialty prepaid health plans [regional Community Mental Health entities] chosen by the department of community health with advice and recommendations from the specialty services panel created in section 109g. The specialty services and supports shall be carved out from the basic medicaid health care benefits package…”

Changes to these requirements in state law could only be made by the legislature .

At the end of the meeting we discussed the best course of action for people affected by this proposal to express their views. The state needs to hear from people with developmental and other disabilities, their families, and friends. Comments can be sent directly to the official Website for the Integration of Dual Eligibles by email, to state officials who are involved in the development of the plan for DE’s, and to legislators to make them aware of the proposal and to ask for legislative hearings on the Integration of Care for Dual Eligibles plan.

More on Michigan's plan for "dual eligibles"

2011-09-21T00:08:00.006-04:00

Common Buckeye

If Michigan’s proposal to the federal government for “dual eligibles” were to be implemented, approximately one-third of mental health consumers would have both medical and specialized mental health services managed and financed by a medical health insurance plan. About half the funding for Community Mental Health services would leave the CMH system to pay for the new system of care. Such a plan would affect everyone receiving services under CMH, including people who are covered only by Medicaid.

Most people with DD and other disabilities and their families would have welcomed a discussion on how to improve CMH services. It is a flawed and chronically underfunded system, but at the very least, the principles upon which it is based and the combination of federal, state, and local policies that protect the rights of the people it serves, give most of those individuals a fighting chance for the services they need, not only for survival, but for a life that is fulfilling and meaningful. The state’s plan to reform the system is a radical approach with too many unanswered questions about how it could be implemented.

The Michigan Department of Community Health (MDCH) has now held 6 public forums to receive comments about Michigan’s proposal to integrate dual eligibles. After attending two of these forums, I found no indication that the MDCH was willing or able to answer the many questions that were asked when the plan first came up for public comment. Those questions (see here and here ) remain unanswered.

A compilation of information and analysis of the dual eligible plan was distributed at a 9/14/11 meeting of the Community Mental Health Partnership of Southeast Michigan (CMHPSM), an affiliation of the mental health boards for the Counties of Lenawee, Livingston, Monroe, and Washtenaw. This document explains the plan better than anything else I have read.

Here are some notable quotes from the dual eligible plan analysis mentioned above:

“What are we to make of all the signs that portend expansion in the use of Health Plans for duals, moving benefits out of current managing structures [CMH and regional affiliations of CMH agencies]? One appraisal might be that the plan, while arguably audacious, is also ill conceived (perhaps to the point of recklessness), and designed – not to better coordinate care – but to achieve savings, to the detriment of dual eligible beneficiaries…”
What is puzzling about the MDCH proposal is that it – in effect – transfers crucial Medicaid state plan and … waiver services and supports to be managed by entities that have little or limited experience with the dual eligible population.”
“The MDCH proposal also exhibits scant understanding of non-medical (e.g., housing, transportation, linkage with various social service programs, etc.) supports – accessed through other community agencies – that are critical to community inclusion and participation for seriously mentally ill and/or developmentally disabled dual eligibles.”

The 10-page initial proposal that landed Michigan a $1 million contract to develop a plan for dual eligibles can be found here.

The Kaiser Family Foundation summarizes all fifteen state plans that were awarded contracts by CMS in this document: “Proposed Models to Integrate Medicare and Medicaid Benefits for Dual Eligibles…” This policy brief can be downloaded here. Other states that had their plans accepted by CMS proposed more flexible arrangements with some offering different plans for different subpopulations of dual eligibles, a much better approach in my opinion.

These documents are not easy to understand unless you happen to be an expert on health care reform, insurance reform, mental health administration, etc., but they may help you to ask the right questions when you respond to the plans that the state has for you DD family member.

FYI: State of the WISD - Special Ed Washtenaw County

2011-09-19T10:53:00.002-04:00

Washtenaw Intermediate School District (WISD)

Parent Advisory Committee (PAC)
invites you to our next meeting:

Tuesday, September 20, 2011

6:30 p.m.

Featuring:

The “State of the WISD” presented by WISD Superintendent Scott Menzel
Meeting Location: Seminar 1

Washtenaw Intermediate School District (WISD)

Teaching and Learning Center

1819 S. Wagner Rd.
Ann Arbor, MI 48106
734-994-8100

For directions please see the WISD website: http://www.wash.k12.mi.us/about/wisddirections.cfm

Key Legislative Contact Information for Michigan Dual Eligibles Project

2011-08-19T11:36:00.003-04:00

If you have unanswered questions and concerns about the Michigan's project to integrate dual eligibles, you can do more than just send your comments to the project Website. Contact the key legislative committees of the Michigan legislature and your own state senator and representative as well as the Governor.

Michigan State Senator correspondence can be sent to:

State Capitol, P.O. Box 30036, Lansing MI. 48909-7536

Michigan State Legislators correspondence can be sent to:

State Capitol, P.O. Box 30014, Lansing MI. 48909-7514

Michigan House Committees:

Health Policy Chair: Rep. Gail Haines, Room N-167 Capitol Bldg. gailhaines@house.mi.gov

Community Health Chair Rep. Matt Lori, Room N-993, Anderson Bldg. mattlori@house.mi.gov

Human Resources Appropriations Chair Rep. Dave Agema, Room N-1093, Anderson Bldg. daveagema@house.mi.gov

Appropriations Vice Chair Joe Haveman, Room N-1194, Anderson Bldg. josephhaveman@house.mi.gov

Michigan Senate Committees:

Appropriations Committee – Sen. Roger Kahn, Room S-324, Capitol Bldg. senrkahn@senate.michigan.gov

Health Policy Chair Sen. Jim Marleau, Room 1010, Farnum Bldg. jimmarleau@senate.michigan.gov

Families, Seniors and Human Services Chair Sen. Judy Emmons, Room 1005, Farnum Bldg. senjemmons@senate.michigan.gov

Dept of Community Health – Chair Sen. John Moolenaar, Room 715 Farnum Bldg. senjmoolenaar@senate.michigan.gov

Dept of community Health - Vice Chair Sen. Bruce Caswell, Room 720, Farnum Bldg. senatebcaswell@senate.michigan.gov

Dept. of Human Services – Sen. Mark, Room S-324, Capitol Bldg. senmjansen@senate.michigan.gov

Michigan Senate Leadership:

Appropriations Senate Majority Leader – Sen. Randy Richardville, Room 106, Capitol Bldg. senrichardville@senate.michigan.gov

Senate Majority Floor Leader – Sen. Arlan Meekhof, Room S-8, Capitol Bldg. senameekhof@senate.michigan.gov

Michigan House Leadership:

Speaker of the House - Rep. James Bolger, Room H-164, Capitol Bldg. jasebolger@house.mi.gov

Majority Floor Leader – Rep. Jim Stamas, Room 153, Capitol Bldg. jimstamas@house.mi.gov

Governor Rick Snyder - P.O.Box 30013, Lansing, MI. 48909, (517) 373-3400 Rick.Snyder@michigan.gov

Attorney General Bill Schuette, G. Mennen Williams State Office Bldg., P.O. Box 30212, Lansing MI. 48909 (517) 373-1110 MIAG@michigan.gov

Michigan Dept of Human Services – Dir. Maura Corrigan, 235 S. Grand Avenue, P.O. Box 30037, Lansing MI. 48909 (517) 373-2035

Michigan Dept of Community Health – Dir. Ogla Dazzo, Captiol View Bldg., 201 Townsend Street, Lansing MI. 48913 (517) 373-3740 moyer1@michigan.gov

Questions on Michigan "Dual Eligibles" Project from Stakeholders

2011-08-19T10:55:00.005-04:00

This is from the Michigan Association of Community Mental Health Boards Executive Board and includes the complete list of questions from stakeholders mentioned in the last blogpost:

Integrated Care for Dual Eligible Beneficiaries in Michigan

The following is a list of Stakeholder questions and concerns as discussed at the MACMHB Executive Board Meeting August 5, 2011. Several forums were held in July offering the opportunity “to learn about and offer input into the state’s plans for integrated care for dual eligibles in Michigan”, however we were engaged late in the process and those who facilitated the regional meetings did not offer answers to our questions.

The questions pertain to three areas.

Changes to Consumer services and treatments:

Who makes the final decision as to which treatments and services are “inappropriate” and/or “too costly”?
Will Habilitative Services be continued to the extent necessary to maintain functioning level and skills and for how long?
Will Payers have the final approval over the PCP process and its content regardless of the individual beneficiary’s opinions?
Will the existing Supports Coordination system be continued and for how long?
What services will be available for those who “opt out”?
Has there been a real effort to ask Stakeholders for their opinions and what they want?
At what point will the CMHSP system no longer be used to deliver MI and DD services?
Will any real consideration be given to allowing regional health homes managed by CMHSP county partners?

Participating Payers:

Will anyone address the exorbitant reserves and extravagant Executive salaries and benefits of the large carriers?
Will anyone address the extreme administrative cost rates that result from these large executive employment packages and insure that Medicaid dollars will not be used to feed increases to these already high costs?
Would it not be worthwhile to compare the participating carrier administrative costs ratios with those of the present CMHSP system already serving these beneficiaries?
Since these Participating Payers have apparently been promised a share in any “cost saving” realized by the plan, what prevents them from gutting services and treatments in order to protect and insure they attain their share of the profits?
Assumed “Cost Savings” based on an improved treatment model for co-morbid conditions could take years before the individuals actually attain improved health and the system realizes the savings. What is the assumed source of additional funding in the interim? Will the Payers be required to use their reserves to cover this shortfall?
Has anyone questioned the logic and/or reasonableness of creating such huge monopolies charged with overseeing both commercial healthcare and tax payer funded Medicare/Medicaid dollars?
Who is responsibility for identifying fraud and abuse and what is the anticipated accountability process?

DE Plan Governance Steering Committee:

Why is there no Stakeholder participation in this committee?
If the committee is charged with governance and oversight, it would follow that part of their responsibility is to insure the stated goals of improving healthcare and cutting costs are included in its charge. What happens when those two objectives are in conflict? Which of the goals
will take priority?
Decisions on or approval of treatment routines and service opportunities could not only alter the quality of life of these beneficiaries but also decide who lives or who does not. Who ultimately makes the final decisions for the most severe segment of this population?
Will the most severe therefore be determined too costly to support in any meaningful manner? This is one of the most important questions as these individuals are the most severely impaired, most challenging to treat, and are considered the least able to contribute to their healthcare costs and/or healthcare needs

More on "Integrating Dual Eligibles" in Michigan

2011-08-19T10:10:00.009-04:00

In July 2011, the Michigan Department of Community Health notified stakeholders about forums on the "Integration of Dual Eligibles". Dual eligibles are people who qualify for both Medicaid and Medicare. Most people with developmental disabilities become eligible for Medicaid when they turn 18 and their families' incomes are no longer considered in determining eligibility. Usually, people with DD qualify for Medicare in addition to Medicaid, when a parent who has been paying into Social Security retires, dies, or becomes disabled.

Michigan is one of fifteen states that has a contract with the Centers for Medicare and Medicaid Services (CMS) to develop a model to "integrate dual eligibles". So far, it appears that the state's plan could radically change the way services are provided to this population. Because dual eligibles are a significant minority served by the mental health system, everyone who receives specialty services through community mental health may feel the impact of these changes.

Presumably, this is all about saving money. According to the Michigan Association of Community Mental Health Boards (MACMHB), "As a group, these individuals [dual eligibles served by the mental health system] have the most complex care needs of persons served by our system. As a result, the Medicaid expenditures for the specialty services for these persons was $1.1M, almost 50 % of the total Medicaid expenditures for specialty mental health and developmental disabilities services statewide."

These figures would not be a surprise to anyone who knows this population well, just as most people would not be shocked to discover that it costs more to treat an aggressive cancer than it does to treat a sore throat or a broken arm. But we aren't necessarily dealing with people who have an intimate knowledge of what it is like to have a severe developmental disability, mental illness, or other condition covered by Medicare and Medicaid. As far as the state and the federal government are concerned, dual eligibles cost too much money and the costs must be reduced. The belief is that, “Providers will experience administrative efficiencies by working with a single administrative system and payer source [probably Blue Cross/Blue Shield or a similar entity] and instead of dealing with multiple entities for authorization and payment of services." The belief of many families and other advocates is that cost reductions are more likely to come from reducing services than from administrative efficiencies.

The State is required to include stakeholders in the development of this plan that will go into effect next year, but stakeholders were kept in the dark about it until recently. Even after four stakeholder forums with two more scheduled in August (see below), people who attended the forums and read the material distributed about the State plan are still scratching their heads wondering what this is all about.

What is truly shocking about all this, is that the MDCH is either unwilling or unable to answer some very basic questions, such as those posed by stakeholders at the Michigan Association of Community Mental Health Boards Executive Board Meeting on August 5, 2011. Here are a few of those questions:

Unanswered questions regarding changes to consumer services and treatments:

Who makes the final decision as to which treatments and services are
“inappropriate” and/or “too costly”?

Will Habilitative Services be continued to the extent necessary to maintain functioning level and skills and for how long?

Will Payers have the final approval over the PCP [Person-Centered Planning] process and its content regardless of the individual beneficiary’s opinions?

Unanswered questions about participating payers [most likely Blue Cross/Blue Shield or similar entity]:

Will anyone address the exorbitant reserves and extravagant Executive salaries and benefits of the large carriers?

Will anyone address the extreme administrative cost rates that result from these large executive employment packages and insure that Medicaid dollars will not be used to feed increases to these already high costs?

Would it not be worthwhile to compare the participating carrier administrative costs ratios with those of the present CMHSP [Community Mental Health] system already serving these beneficiaries?

Unanswered questions about the Governance Steering Committee for the dual eligibles plan:

Why is there no Stakeholder participation in this committee?

If the committee is charged with governance and oversight, it would follow that part of their responsibility is to insure the stated goals of improving healthcare and cutting costs are included in its charge. What happens when those two objectives are in conflict? Which of the goals will take priority?

Will the most severe therefore be determined too costly to support in any meaningful manner? This is one of the most important questions as these individuals are the most severely impaired, most challenging to treat, and are considered the least able to contribute to their healthcare costs and/or healthcare needs.

Due to feedback from families and other advocates, the state has added two additional meetings for stakeholders regarding the "dual eligible" proposal for integrated care:

Greater Lansing

Date: Wed., August 24
Time: 1–4 PMVenue: Eagle Eye Golf Club (at Hawk Hollow), 15500 Chandler Road (directions)
(517) 641-4570
Directions

and

Detroit

Date: Mon., August 29
Time: 1–4 PMVenue: Greater Grace Temple Banquet Hall, 23500 W. Seven Mile Rd., Detroit

(313) 543-6000
Directions

If you were unable to attend the previous forums, go to the project Website or call Dawn Wade (517) 484-4954 to register. It is critical that as many people as possible attend. Ask questions concerning aspects of the plan you do not understand or cannot reconcile with your needs. To the extent that you have unmet needs, that should also be expressed as the purpose is to obtain stakeholder input concerning needs. If your needs are currently being served and you fear they will not continue, or will be diminished, that is also a valid statement to express.

If the state is unwilling or unable to answer basic questions about the dual eligible integration project, the results could be disastrous for this vulnerable and relatively powerless population.

Written comments can be e-mailed any time to Integratedcare@michigan.gov. See the project Website here and follow the links for more information.

Medicaid funds plundered by nonprofits in New York

2011-08-02T11:51:00.003-04:00

The New York Times features an article today called "Reaping Millions in Nonprofit Care for Disabled" By Russ Buettner. It is one of a series of New York Times reports on treatment of the developmentally disabled and how money is spent on their care.

This installment is not as heartbreaking as past stories of rampant abuse of people with disabilities in some of New York's state run group homes and facilities, but the plundering of the Medicaid system by non-profits and the lack of oversight of their activities is a significant part of the corruption of the system of care. I'm sure this problem is not unique to New York, but New York is a big state and it does corruption in a big way.

According to the article, New York spends $10 billion a year for care of people with developmental disabilities with more than half going to private providers with little oversight of their spending.

The story focuses on the Young Adult Institute Network run by the Levy brothers from Brooklyn. They both earned close to $1 million a year each as top executives at the Medicaid-financed nonprofit. Public money paid for luxury cars and homes as well as for a year's worth of living expenses in graduate school for one of their daughters. From 2007 - 2009 the brothers also received consulting fees of $50,000 a year from one of the organization's affiliates.

For people who have been around the disability business for a long time, there are many details in the article that strike a familiar chord:

The organizations began to grow as a response to deinstitutionalization of people with developmental disabilities in the 1970s. As more money became available for community services, the organizations expanded, replacing parents who started the organizations with professionals skilled at fund raising.
The power of the organizations matched the power of government agencies in determining services and funding. According to the article, "The providers and officials from the Office of Mental Retardation and Developmental Disabilities — now called the Office for People With Developmental Disabilities — met monthly to agree on new programs, expansion of existing programs and reimbursement rates. Then, together with the agency officials, they would lobby the Legislature and the governor’s office for the money...The providers became powerful advocates for the people in their care, and savvy strategists, alert to opportunities to increase financing."
In the early 1980s the organizations got wind of a new state formula that greatly increased rates for people with vision problems. Suddenly, they reported large increases in the number of people who had trouble seeing." 'We called it the day everyone went blind,' said Mr. Castellani, the author of a book about the New York system of caring for the developmentally disabled. "

These and other financial shenanigans are covered thoroughly by the Times. Although there was little found to detract from the the good reputation that the Young Adult Institute has for providing quality care, there is also nothing that justifies the arrogance of the leaders of the nonprofit to exploit people with disabilities for their own enrichment.

The debt ceiling crisis according to Groucho

2011-07-24T14:40:00.000-04:00

The Feds double standard on community living

2011-07-22T10:20:00.009-04:00

Here is an interesting article by Sally Abrahms published in the AARP Bulletin for July/August 2011 on housing for homeless veterans.

"Homeless Veterans No More" describes a model program to house and provide services to about 40 formerly homeless veterans at the Gordon H. Mansfield Veterans Community in Pittsfield, Massachusetts. The veterans live in brand-new attached units in a development subsidized by the U.S. Department of Housing and Urban Development and the the Department of Veterans Affairs. Each veteran buys a limited-equity ownership in the development and pays about $7,000 in rent per year with some of that refunded. In addition to earned income, they receive Social Security and veterans disability benefits

A non-profit organization, Soldier On, created the project and provides medical, mental health, and job training services on-site or at its transitional shelter building next door.

According to the article, of the 550 vets served per year by Soldier On, 88% have substance abuse issues and 84% have mental health issues. Most of these veterans not only were homeless, but they also have disabilities similar to non-veterans who are served through other federally-funded programs.

Compare this situation to non-veterans with disabilities who receive Home and Community Based Services (HCBS) through waivers that allow Medicaid funds to pay for services in the community. The same federal government that subsidizes and supports vets in the community described above is proposing to place similar communities off-limits for non-veterans with disabilities. The federal Centers for Medicare and Medicaid Services (CMS) characterizes these settings, especially larger congregate housing developments, as isolated, segregated, and not sufficiently integrated into the community to qualify as community based. In fact, for people with developmental and intellectual disabilities, CMS would not even call the Soldier On program a community, dismissing the idea that people with disabilities with common needs and interests might chose to live together for their mutual benefit.

If the programs and housing for homeless veterans were subject to the proposed rules from CMS and they had to rely on HCBS funding, they would suffer severe limitations:

The Mansfield Veterans Community is located next door to the transitional shelter building where many of the vets receive services. Under the CMS proposed regulations, that would not be allowed because CMS has determined that a setting that is "in a building on the grounds of, or immediately adjacent to, a public institution; or a housing complex designed expressly around an individual's diagnosis or disability" is not sufficiently integrated into the community.
Soldier On has received federal funding to build 60 homes on the campus of the VA Medical Center in Northampton, Massachussetts, a program that would not receive Medicaid funding or support under the proposed CMS rules. The VA Medical center has 85 psychiatric beds and a 66-bed nursing home care unit located on the Northampton campus, making it too institution-like for the CMS, regardless of whether residents could use the services provided there.
Residents at the Mansfield Veterans Community have a great deal of personal freedom and independence, but there are rules they have to follow. They are accountable for their actions, such as for not paying their rent on time or having a drug or alcohol relapse. CMS proposals would only allow settings that do not impose rules on residents that could limit "daily life activities". It is questionable whether the restrictions imposed on the veterans would be tolerated by CMS if a disabled non-veteran needed and chose to live in a similar setting.

Of course there are differences in the population of homeless disabled veterans and people with developmental and intellectual disabilities, but there are a lot of similarities such as stigmatization by society, difficulty being accepted and integrated into the community, and numerous unmet physical and mental health needs.

In the case of people with developmental and intellectual disabilities, despite all the lip service paid to "self-determination" and "independence", the federal government and government-funded advocacy organizations believe that they know better than people with disabilities and their families what they should want and need. To unnecessarily limit options available is an impediment to creating a system of care that can truly meet the needs of this diverse population.

Michigan public forums on "Integrating Care"

2011-07-20T13:26:00.004-04:00

The Michigan Department of Community Health is holding public forums on "Integrating Care for Dual Eligibles in Michigan".

Before your eyes glaze over, let me explain.

Dual eligibles are people who qualify for both Medicaid and Medicare. For an adult with developmental disabilities, this usually happens when a parent who has been paying into Social Security dies or retires. The disabled adult-child becomes eligible for Social Security and Medicare benefits. The vast majority of adults with developmental disabilities also qualify for Medicaid when they become 18 and the family's income is no longer counted in determining eligibility for Medicaid services. Medicaid pays for medical services as well as an array of mental health services provided through local community mental health agencies.

The Michigan Department of Community Health (MDCH) has contracted with the federal Centers for Medicare and Medicaid Services (CMS) to develop a plan to integrate care for people who are eligible for both Medicare and Medicaid. The ultimate goal of the project is to serve this population more efficiently by improving the quality of care and reducing costs.

The forums for public input on the project will be held in four different locations in the state. For those living in Southeast Michigan, the closest public forum will be in Southfield:

1 - 4 pm on Wednesday, July 27, 2011
The Hilton Garden Detroit-Southfield
2600 American Drive
Southfield, MI

In addition to hearing a presentation from Michigan’s Medicaid agency, forum participants will be asked to describe what they like about the current system as well as issues that exist. They will also offer feedback regarding the state’s proposed approach for integrating care.

WHY ARE THESE FORUMS IMPORTANT? They are an opportunity for people with DD and their families to remind the state that there is a small but important minority of people who are included in this population of "dual eligibles" who are often overlooked in discussions about reform of our health care system.

This is from the Michigan Association of Community Mental Health Boards:

"Persons with specialty behavioral health needs [the latest term for mental health services] make up a significant part of the dual eligible population. They represent more than 25% of the dual eligible population statewide. They also represent a significant part of the persons served by the public mental health system. In FY09, 54,396 of the persons served by the community mental health system were persons with dual eligibility, more than 25% of the total persons served. There were 35,339 adults with SMI, 22 children with SED, 18,093 people with DD (6,010 of which were on the Habilitation Supports Waiver). As a group, these individuals have the most complex care needs of persons served by our system. As a result, the Medicaid expenditures for the specialty services for these persons was $1.1M, almost 50 % of the total Medicaid expenditures for specialty mental health and developmental disabilities services statewide."

Even if your family member is only eligible for Medicaid, changes in care for "dual eligibles" could significantly affect the delivery of all mental health services. We need to be part of the reform effort rather than victims of it.

More Information:

Agenda for the forums including discussion questions

Stakeholders may submit comments on integrated care eat any time to: Integratedcare@michigan.gov .

For questions about the forums, contact Dawn Wade at at Public Sector Consultants, at dwade@pscinc.com or (517) 484-4954.

Michigan Medicaid comments on CMS proposed rules (CMS-2296-P)

2011-07-07T12:19:00.013-04:00

Comments from Michigan Medicaid were submitted by Jacqueline Coleman here. To view the document, scroll down the page to Attachments - "Comments on CMS Proposed Rule CMS-2296-P" and click on "PDF" to open the file.

The proposed regulations affect people who are elderly and live in Assisted Living Facilities and other settings as well as people with developmental disabilities. Michigan Medicaid is concerned with what will happen to people living in these ALF's and other licensed settings who have chosen them over care in a nursing home, if the proposed regulations do not allow waiver services to be provided in these settings. The MI Choice waiver mentioned here is another type of waiver that Michigan uses to provide services to people who are elderly or disabled.

Michigan Medicaid comments on this proposed rule: "441.301(b)(1)(iv) ...A setting is not integrated if it is: (A) Located in a building that is also a publicly or privately operated facility that provides inpatient institutional treatment or custodial care; in a building on the grounds of, or immediately adjacent to, a public institution; or a housing complex designed expressly around an individual’s diagnosis or disability, as determined by the Secretary; or (B) Has qualities of an institutional setting, as determined by the Secretary."

The state agency makes an important distinction between "optimal community integration" and other options:

Michigan would agree that the description of acceptable settings represents optimal community integration. However, as described it would eliminate important options that now contribute to the array of settings available to adults with disabilities and the elderly. In 2009, Michigan amended its MI Choice HCBS 1915 (c) waiver to include services provided in licensed settings. Licensed settings in Michigan include Adult Foster Care (AFC) homes and Homes for the Aged (HFA).

...
As of May 1, 2011, the MI Choice waiver was providing services to 529 participants in licensed settings. Of this group, 387 participants transitioned to the setting from a nursing facility. The other 142 were at imminent risk of entering a nursing facility when enrolled in MI Choice. These are participants who chose the setting and remain there even though they have the option to
return to a nursing facility or, in some instances, move to a more independent setting. The vast majority of these homes would not meet the criteria in the proposed rules. Virtually all of these MI Choice participants would move to a nursing facility. This move to a more restrictive setting would ignore the participant’s choice, diminish the participant’s quality of life and cost Medicaid 2-3 times as much per day.

The following examples describe existing situations that would not meet the proposed criteria:

MI Choice waiver participants living in homes licensed as an AFC on the grounds of continuing care retirement communities that included a skilled nursing facility. The home may provide a high level of independence and community integration. Further, the resident very likely appreciates the proximity to the skilled nursing facility for situations when that level of care is necessary, e.g. recovering from an illness. In some cases, the AFC resident has a spouse in the skilled nursing facility and the proximity allows them far greater opportunities to maintain their relationship.
An AFC or HFA that provides dementia care is a setting designed around a diagnosis, which would exclude it from approved settings under the proposed rules. For the MI Choice participants residing is such settings, the residence provides a more home-like setting and more independence than a skilled nursing facility. A move from such a home to a nursing facility would be extremely detrimental to the resident and would outrage the resident’s family.
Many of the MI Choice participants in licensed settings are not elderly. The preamble to the proposed rules suggests that they would be excluded from the provision that certain assisted living facilities may permissible for older persons.
There are a small number of MI Choice participants living in licensed settings who simply have no other place to live. These include individuals with behavioral problems, such as sexual acting out, that let to their denial of admission by nursing facilities and other settings. MI Choice services provided in a small, all male AFC resulted in a very satisfactory and successful setting. There are also individuals with Traumatic Brain Injuries that presented unique and significant behavioral issues. There are small AFC homes that specialized in care for this population and provide a far more successful and independent setting than any other option.

There are also comments on Person Centered Plans and other concerns that arise out of the CMS proposals.

Ian the Graduate: For he's a jolly good fellow...

2011-07-05T20:55:00.004-04:00

Ian graduated from school on June 8th this year. For special education students who make it through the 25 - 26 years they are allotted by Michigan's Special Education law, graduation is a bittersweet moment. Ian has many fans at High Point School among the teachers and support staff who will miss him dearly, almost as much as he will miss them. He will probably see his best friend David only on special occasions. We are working out things for him to do with his time, but the truth is it will be hard to match the program he is leaving.

High Point School is the only center-based program remaining in the Washtenaw Intermediate School District (WISD). It serves 60 - 70 students with multiple disabling conditions, including severe medical, physical, intellectual, and behavioral disabilities. The program shares a building with Honey Creek School, a charter school sponsored by the WISD. For the parents of High Point students, the High Point Program is generally valued most for the skill and experience of its staff and an environment that is caring and supportive of both students and families. The benefit of sharing a building with the charter school for kindergarten through 8th-graders is frosting on the cake.

The inclusion movement, whose proponents insist that all children should be educated together in the same classrooms, has led to the closure of many center-based programs over the last twenty years. High Point avoided closure by bringing regular education students into the special education building. Opportunities for both groups of students to spend time together are informal and relaxed and neither group has had to give up anything to accomplish this.

I am grateful for the teachers and support staff at High Point School who are so good at what they do that even parents can forget just how difficult their jobs are. Students with tracheostomies and feeding tubes, seizures, difficult behaviors, exotic syndromes, and frequent medical emergencies don't seem to faze them. What you see as an observer walking through the halls are purposeful activities and happy and engaged students.

When I think of Ian's friend David, I will always remember him in his favorite spot in the corner of the classroom where he can see and hear everything that goes on. Although he does not talk, I'm almost certain he manages to communicate to his mother everything that went on at the end of the day. He loves to listen in on conversations and stares daggers through anyone who comes between him and his favorite video playing on the TV screen. He has a sign up on the wall that a teacher's assistant found for him that says:

I'd like to think that Ian may do the same some day and boy, will we get an earful.

Michigan comments on CMS proposed rules (CMS-2296-P)

2011-06-30T11:28:00.001-04:00

If you would like to see a good sampling of comments from Michiganders on the CMS proposed rules, follow this link.

The proposals from the Centers for Medicare and Medicaid Services would limit where Home and Community Based Services could be provided, causing disruption for people already living and receiving services in settings that would no longer be approved by the CMS. For future recipients of HCBS services, their choice of options would be restricted to those determined by CMS to be "integrated in the community" and "not institutional in nature".

As you will see, there are a variety of views on these proposals and many thoughtful responses.

White House disability call features Jill Biden, Lynnae Ruttledge, and Sharon Lewis

2011-06-24T16:52:00.001-04:00

White House disability calls occur once a month to keep you informed on a variety of issues and to introduce you to people who work on disability issues in the Federal government.

If you would like to be added to the White House Disability Group e-mail distribution list, e-mail disability@who.eop.gov and provide your full name, city, state, and organization.

Dr. Jill Biden will be speaking from Greece. She is leading a Presidential delegation to the Special Olympics in Athens. Also on the call will be Lynnae Ruttledge, Commissioner of the Rehabilitation Services Administration, and Sharon Lewis, Commissioner of the Administration on Developmental Disabilities.

Call in at least five minutes early to participate in the call.

Conference call information:

Dial in for listeners: 800-230-1951

Title: White House Disability Call (use instead of code)

Date of Call: 06/27/2011

Start Time: 10:30 AM Eastern (dial in 5 minutes early)

Arkansas v. DOJ: Federal Court supports parents and guardians and defines integration under the ADA

2011-06-24T11:41:00.006-04:00

The U.S. Department of Justice spent years trying to prove that the Conway Human Development Center in Arkansas (an Intermediate Care Facility for the Mentally Retarded - ICF/MR) violated the rights of its residents under the U.S. Constitution and the Americans with Disabilities Act by providing substandard care and failing to integrate residents into the community. The Court resoundingly disagreed and dismissed the case.

Why is this case important? The Americans with Disabilities Act and its interpretation by the Supreme Court in the Olmstead decision have been cited by many professionals and advocates to argue against all forms of congregate living and specialized services provided in group settings. They incorrectly claim that grouping people with disabilities together is segregating and therefore discrimination under the ADA. This case shows that even in a larger facility, the needs of the individual, the appropriateness of care, and the voices of parents and guardians are paramount in defining the least restrictive environment for each person. Non-institutional settings do not inherently guarantee the greatest integration possible for any individual. To limit services and residential options to "non-disability" settings does nothing to assure that a particular individual will be integrated into the community to the extent appropriate or possible for that person.

Here is a summary of the case from VOR, the only national organization that supports a full range of services and residential options for people with intellectual and developmental disabilities, including home and community based services and ICFs/MR. VOR (of which I am a member) is supporting legislation, H.R. 2032, to restore individual and family decisionmaking in cases such as this one.

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U.S. v. Arkansas: Victory for Choice
http://vor.net/get-help/legal-resources

Background
In an 85-page ruling, Chief U.S. District Judge J. Leon Holmes dismissed a U.S. Department of Justice (DOJ) case finding that the DOJ failed to prove its claims that the Conway Human Development Center violated its residents’ rights under the U.S. Constitution by providing substandard care, as well as under the Americans with Disabilities Act (ADA) (community integration). Judge Holmes questioned the authority, expertise and methods of several expert witnesses used to support the federal government’s arguments. He extensively cited testimony of residents’ parents and guardians who he noted were “overwhelmingly satisfied” with the treatment the residents receive at Conway and “believe that the Center is the least restrictive, most integrated placement appropriate for their children and wards.” (U.S. v. Arkansas, p. 8)

Family / Guardian Decisionmaking
“Most lawsuits are brought by persons who believe their rights have been violated. Not this one . . . All or nearly all of those residents have parents or guardians who have the power to assert the legal rights of their children or wards. Those parents and guardians, so far as the record shows, oppose the claims of the United States. Thus, the United States [Department of Justice] is in the odd position of asserting that certain persons’ rights have been and are being violated while those persons – through their parents and guardians disagree.” (Id., p. 1).

Defining Integration
“’Community placement’ is a term that implies a more integrated, less restrictive setting than does the term “institution,” but it does not follow from the use of these terms that a resident automatically will have a greater degree of interaction in community placement, i.e., with a waiver provider, than in an institution such as Conway Human Development Center. The evidence establishes that residents of Conway Human Development Center do interact with nondisabled persons – the Center is not a prison with inmates barred from interaction with the outside world; and conversely, the evidence establishes that placement with a waiver provider does not guarantee any amount of interaction with nondisabled persons.” (Id., p. 61; see also, p. 81, citing Olmstead, “[DOJ] Failed to prove that Conway Human Development Center is not the most integrated setting appropriate to the needs of any specific resident.”)

The “oddity” of a federal agency suing itself
[DOJ cases = DOJ v. HHS (CMS); compare to, P&A cases = HHS (ADD) v. HHS (CMS)].
“It is another oddity of this case that the institution at issue is funded and regulated by one department of the executive branch of the federal government while another department of the executive branch contends that its conditions are so deplorable as to violate rights guaranteed to the institution’s residents by the United States Constitution. More pointedly, the United States simultaneously funds Conway Developmental Center, certifies it as eligible for those federal funds, and contends that the conditions there are so deplorable as to be unconstitutional.” [Id., p. 4 (fn 2)].

Compare to H.R. 2032
Just as the federal judge in the Conway case recognized, families and guardians are a necessary and important voice in matters impacting their family members with significant intellectual and developmental disabilities, including where they receive services and the quality of those services (see also, DD Act and Olmstead).

H.R. 2032 aims to restore individual and family decisionmaking in federally funded class action lawsuits and DOJ actions. Specifically, H.R. 2032 provides that residents of ICFs/MR, or where appointed, their legal guardians, receive notice of a federally-funded class action lawsuit involving the ICF/MR before it is filed, and be given a time limited opportunity to opt out. H.R. 2032 also requires that DOJ consult with families as part of any action, and if a lawsuit is filed provides residents of the affected ICF/MR or where appointed, their legal guardians, a right of intervention. The Conway case helps demonstrates both the value of family/guardian input and DOJ’s history of excluding their input. Similar examples include cases in Virginia, Georgia, Illinois and Tennessee

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Read the full decision here.

More comments on proposed HCBS regulations (CMS-2296-P)

2011-06-08T09:18:00.003-04:00

Comments from Ed Diegel at ddAdvocates of Michigan, 6/1/11:

This is a time of tremendous change regarding funding, ideology and governance of the service delivery process for persons with Developmental Disabilities.
...
Ideology is becoming more rigidly entrenched in a system which often minimizes the value of family involvement and favors a one dimensional, full inclusion model for all persons with developmental disabilities without regard for their capabilities, or personal desires and choices.

Common-sense, which says keep what is good and build on it, is ignored. It would define a success as a community that provides a full spectrum of services to meet the needs and desires of all persons with developmental disabilities—from the most involved to the most independent; and it would allow individuals the right to move back and forth between settings as their circumstances and desires changed.

Instead current ideology sees all ‘consumers’ including the most disabled living in completely integrated settings; something many neither want nor can handle. In addition it threatens funding for even the most successful ‘congregate settings’ based on artificial criteria like the number of residents or workers, or flexibility of meal time rather than real benchmarks like the quality of supports provided and the desire of clients to participate there.

Advocacy agencies including several in Michigan envision the elimination of all congregate settings and activities (group homes, work shops, Special Olympics, Fun Clubs and so on).
...

Most imminent of these issues are proposed regulation changes impacting the Home and Community Based Services Waiver administered by the Centers for Medicare and Medicaid Services (CMS).

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More comments from Ed, 6/8/11

The following link to Age of Autism is must reading for anyone in the country who considers themselves an advocate for persons with developmental disabilities. Notice that the author nowhere wants to restrict services or the independence of high functioning person with disabilities; for instance: those who are capable of enjoying even full time jobs, college experiences and home ownership. What the author wants, and many people who commented on the link want is for CMS to recognize that its proposed residential guidelines:

will be too limiting or demanding for most persons with severe to moderate disabilities and that

needed and desired and appropriate services will be ruled out and / or dismantled.

One size fits all mentality is very popular in mainstream advocacy circles in Michigan and its effects are already being seen in

underfunding of congregate day programs

efforts to close larger group homes regardless of quality of service

limited housing and respite options for the most severely impaired.

In effect, mainstream advocates hold up the capabilities of our most capable children and adults and pretend that the rest don't exist or will be able to tag along. This mentality is now being reflected in proposed CMS Guidelines for housing ...

Link to Age of Autism here.

Comments on CMS proposed regulations are due by 5 p.m. June 14, 2011

Submit comments electronically here .

Link to proposed regulations here.

Link to Understanding HCBS Waivers here.

Link to ddAdvocates of Michigan here.

Link to comments on proposed CMS regulations submitted by Jill Barker here.

Truth vs. myth

2011-05-31T22:45:00.002-04:00

"The great enemy of the truth is very often not the lie -- deliberate, contrived and dishonest, but the myth, persistent, persuasive, and unrealistic. Belief in myths allows the comfort of opinion without the discomfort of thought." ----------- John F. Kennedy

Comment #5 on CMS proposed regs (CMS-2296-P): limiting access to services and preventing appropriate care

2011-05-26T09:48:00.003-04:00

ISSUE #5: The proposed regulations to "prevent the provision of unnecessary or inappropriate care" will do the opposite: limit access to needed services and prevent care that is determined to be appropriate by the individual and people who are familiar with his or her needs.

CMS proposes to limit HCBS waiver services only to settings that are "integrated in the community, provide meaningful access to the community and community activities, and choice about providers, individuals with whom to interact, and daily life activities..." Other comments criticize settings that do not allow individuals “to choose whether or with whom they share a room, limit individuals’ freedom of choice on daily living experiences such as meals, visitors, activities, and limit individuals’ opportunities to pursue community activities.”

Any form of congregate living, even living with one’s own family, will inevitably have rules affecting an individual’s daily life activities and freedom of choice. There may also be restrictions on “daily life activities” to protect the person and others from harm (i.e. not allowing someone to run out in traffic and get hit by a car but instead providing a fenced in yard where the person can move about without being injured). To eliminate options that have rules and restrictions because some people would find those rules and restrictions incompatible with their own needs and desires is foolish.

The person-centered planning meeting should be the place where the individual’s needs and preferences are matched with compatible and appropriate services and living arrangements and where modifications to existing settings and acceptable compromises are determined. Maintaining a full continuum of services and settings is a better plan than eliminating options because some people might find them objectionable.

The proposal states that a setting is not integrated in the community if it is…"Located in a building that is also a publicly or privately operated facility that provides inpatient institutional treatment or custodial care; in a building on the grounds of, or immediately adjacent to, a public institution; or a housing complex designed expressly around an individual's diagnosis or disability, as determined by the Secretary; or…Has qualities of an institutional setting, as determined by the Secretary..."

These proposals appear to eliminate HCBS funding for many forms of congregate care for people with disabilities or for any specialized services provided in group settings and designed for people with specific disabilities. It appears that CMS has come to the conclusion that the worst thing that could happen to people with disabilities is that they would have to associate with people like themselves.

Here are just a few of the programs and services that could no longer be provided with HCBS waiver funding:

ICF/MR community resource programs that offer medical, dental, respite, and recreational services to people living in surrounding communities…Harbor House Ministries in Ottawa County, Michigan, that serves people with the most severe disabilities in three 12-bed group homes designed and planned by parents and caregivers with support from a variety of community organizations – care and support includes both specialized services along with appropriate community involvement for each resident… Just Us Club in Ann Arbor, Michigan, a parent-directed afterschool program for students and an activity/respite program for adults, all with moderate to severe developmental disabilities - it is the most popular respite program in the county and provides care for adults for about $6.00 per hour (about half the cost of paying a respite worker to come into one’s own home); a group home in Grand Rapids, Michigan, for high-functioning adult men with autism built on the grounds of a retirement community – each resident has his own bedroom and bath, living independently but together in a supportive environment…a local nursing home that provides overnight respite care for a severely brain-injured man who lives with his family….planned communities in Florida modeled on retirement communities, developed by families who are responding to the waiting list of about 20,000 people with developmental disabilities who receive no services…Wheelchair basketball for people with spinal cord injuries…Group homes designed for people with specific medical problems to help manage the medical condition while providing services for as normal a life as possible…The Community Respite Center in Jackson, Michigan, that provides respite care and activity programs for children and adults at a Medicaid nursing facility -- guests can be accommodated at any level of nursing skill including feeding tubes, medications, and breathing and suctioning treatments…

While there are hundreds of thousands of people with disabilities on waiting lists for services across the country, there is no shortage of ideas for improving the lives of people with developmental disabilities. When CMS deliberately and unnecessarily narrows the choice of options available based on a misinterpretation of law and a questionable ideology, it becomes an impediment to creating a system that can truly meet the needs of the full range of people with developmental disabilities, especially for those who are either not served at all or inadequately served by our current system.

Comment #4 on CMS proposed regs (CMS-2296-P): person-centered planning regs flawed by lack of common sense

2011-05-26T09:10:00.009-04:00

Person-centered planning should be the process by which the individual plan of services is developed. The plan of service should reflect the services appropriate to the needs and preferences of the individual including the settings in which services will be delivered. Michigan has used person-centered planning for over a decade, but for some people it has become a charade, a meeting where the participants go through the motions of developing a plan, only to have the actual plan of services reflect only that which the Community Mental Health agency is willing and able to provide with a heavy reliance on so-called natural supports, all the things that parents and other family members do for the person with a disability to fill in the gaps.

The shortcomings of person-centered plans could be improved by better information for people with disabilities and their families emphasizing the importance of the process and the role they play in its development and better enforcement and monitoring by the state and local agencies to ensure that the process is properly implemented.

The proposed CMS regulations would do nothing to improve the process in Michigan and in many ways would make it worse.

ISSUE #4: The person-centered planning process makes unfounded assumptions, fails to mention legal guardians and families, appears to attempt to regulate unpaid family members and friendly volunteers, and could violate the confidentiality of the person receiving services.

Proposed regulations for a person-centered planning process make unsupported assumptions about people with disabilities: that the process will be led by the individual receiving services; that all people receiving services want to lead this process (what this means exactly is not explained) and that all have the capacity to make and communicate reasonable decisions on their own behalf. People with severe and profound developmental disabilities may function at the level of infants or young children and lack the judgment to realize the implications of their decisions if they can make them at all. No mention is made of families or legal guardians as having any place in this process.

Where a legal representative (a guardian or conservator) has been appointed by a court, that person should be recognized as the representative for the individual for all aspects of the individuals care that are covered by a court order.

CMS proposes that the person-centered plan "includes strategies for solving conflict or disagreement with the process, including any conflict of interest concerns." It is unclear what the purpose of this statement is, but I suspect from recent events in Michigan that one reason it has been proposed is to encourage agencies to challenge the authority of guardians when the guardian is perceived by others to not represent the best interests of the person with a disability. In Michigan, some administrators and advocates have encouraged Community Mental Health agencies to challenge guardianships in court when the guardian (most are parents or other family members) disagrees with what others perceive to be the individual’s needs and preferences.

Disagreements over agency decisions or the need for services should be handled outside of the person-centered planning process through formal or informal due process procedures including Medicaid hearings. To have them as part of the planning process can lead to intimidation of parent and family guardians and less protection of the individual from bad decisions by the agency that is funding services.

CMS proposes that the plan, “…Reflect the services and supports (paid and unpaid) that will assist the individual to achieve identified goals and the providers of those services and supports....Be signed by all individuals and providers responsible for its implementation." This proposal could easily be interpreted as an attempt by CMS to regulate unpaid services and supports that are provided by family, friends, and volunteers with the mutual agreement of the individual or his or her legal representative. It should be clear that participating in the planning process and voluntarily assisting the person with a disability places no legal obligation to provide unpaid services or responsibility to implement the person’s plan.

Unpaid family and friends should be supported and encouraged for all they do voluntarily for their disabled family members and friends. They should be recognized for their important contribution to the overall support system for people with disabilities, but they should not be subject to regulation and possibly intimidation by agencies that provide services if they do not meet their “responsibilities” for implementing the plan.

CMS proposes that the Plan of Service must "be distributed to everyone involved...in the plan.” Because plans of service may contain the most intimate details of the care and support of a person with a disability, their distribution to everyone involved in the plan (both paid and unpaid) could be a breach of confidentiality.

Distribution of the plan, unless it is to service providers under the control of the agency providing funding, should be done only with the written consent of the individual or his or her legal representative.

Comment #3 on CMS proposed regs (CMS-2296-P): flexibility vs. right to appropriate care

2011-05-26T00:38:00.001-04:00

ISSUE #3: Combining Target populations under one waiver may have unintended harmful consequences.

Currently, when a state applies for HCBS waivers, each waiver must be limited to “one of the following target groups or any subgroup thereof that the State may define”:

Aged or disabled, or both.
Mentally retarded or developmentally disabled, or both.
Mentally ill.

Under the new proposal, CMS states, "We recognize that some States and stakeholders want additional flexibility to combine target groups in order to provide services based upon needs rather than diagnosis or condition, and for administrative relief from operating and managing multiple section 1915(c) waiver programs."

Individual eligibility for waiver services, as well as for other government-funded services, is based on a broad diagnosis, such as developmental disability or intellectual disability/mental retardation, but the specific services provided are based on individual need as described in an individual service plan. These proposals will not change that.

By breaking down the barriers between targeted groups, it is more likely that states and local governments will see this as an opportunity to mix groups of individuals together who are incompatible. These proposed regulations do not specifically address this problem.

What if a state decides to use its single population waiver funding to serve the most people it can at the expense of the most needy or most costly population? How does CMS propose to protect people who need relatively costly services to survive, let alone to continue living in community settings of their choice?

More flexibility to states to administer programs should not come at the expense of individual protections and the right to appropriate care.

Comment #2 on CMS proposed regs (CMS-2296-P): Don't use Olmstead as an excuse

2011-05-26T00:23:00.003-04:00

As is often the case, the Americans with Disabilities Act and the Supreme Court's Olmstead decision are being used incorrectly to justify restrictions on needed services and programs for people with developmental disabilities.

ISSUE #2: Rationale for changes are not supported by law

Under background information, the CMS seeks "to ensure that Medicaid is providing needed strategies for States in their efforts to meet their obligations under the Americans with Disabilities Act (ADA) and Supreme Court's decision in Olmstead v. L.C., 527 U.S. 581 (1999). In the Olmstead decision, the Court affirmed a State's obligations to serve individuals in the most integrated setting appropriate to their needs..."

The CMS proposed regulations go beyond this mandate and exclude settings that "have the qualities of an institutional setting".

The Supreme Court's Olmstead decision supports choice, despite the fact that it has been widely misinterpreted as a mandate to close all institutions: “We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119 S. Ct. at 2187.

Furthermore, the Olmstead decision does not comment specifically on or mandate the closure of community-based programs or residential placements of any size nor does it designate these programs as institutional in nature and therefore discriminatory. Olmstead, and by extension the Americans with Disabilities Act, gives no support to eliminating or limiting access to settings that are "institution like", housing complexes that are "disability-specific" and "expressly designed around an individual's diagnosis”, if these services are appropriate to the needs of the individual.

ADA regulations on integration say, "A public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities." [28 C.F.R. §35.130(d)].

The phrase, "appropriate to the needs of qualified individuals with disabilities" suggests that appropriateness is determined on an individual basis by the individual and the people who know his or her needs, and not by regulators or advocates who have no knowledge of the person and his or her needs and preferences.

Comment #1 on CMS proposed regs (CMS-2296-P): It's the economy, stupid!

2011-05-25T22:30:00.006-04:00

The Centers for Medicare and Medicaid Services (CMS) is proposing to change regulations for Home and Community Based Services (HCBS) waivers. These Medicaid waivers are granted to states to fund services in community settings for people who would otherwise be eligible for institutional care in a hospital, nursing facility, or Intermediate Care Facility for the Mentally Retarded (ICF/MR).

If adopted, these proposed regulations will have a significant effect on people with developmental disabilities by limiting the settings in which waiver services can be provided and changing the person-centered planning process for developing an individual plan of service. They would also increase state administrative flexibility by allowing states to combine previously targeted populations under one waiver. Currently, people with developmental disabilities are covered by the Michigan Habilitation Supports Waiver (HSW) that funds services in a variety of settings including the person's own home (either living independently or with family), supported living sites, group homes, day programs, supported employment, and skill-building and specialized community-based work programs.

ISSUE #1: CMS must consider the economic climate in which changes to regulations will occur and protect people with developmental disabilities from potentially harmful effects.

Many state governments, especially Michigan's, are in dire financial straits. If given the incentive and opportunity by CMS, most states would likely reduce or shift Medicaid expenditures by limiting the choice and availability of services for people with developmental disabilities and their families. These proposed regulations give states the excuse to do just that and could result in significant harm to people with developmental disabilities.

Some advocacy groups, in their zeal to promote full community inclusion for every person with a disability, have supported limits on choice through the elimination of or restrictions on access to programs and services that they believe are segregating and discriminatory. Others, especially people advocating for loved ones with more severe cognitive and behavioral disabilities, recognize the importance of maintaining a full spectrum of specialized services and living situations that meet the diverse needs of this population. It is clear from the CMS proposal that the agency has only listened to advocates who favor limiting the settings in which HCBS will be provided. Not one opinion in opposition to this approach is mentioned in the background information or account of responses received from a previous solicitation of comments on these issues in 2009.

CMS should not allow or encourage states to eliminate necessary options under the guise of promoting community integration.

Link to proposed regulations (CMS-2296-P)

Submit comments here.

Michigan State Board of Education: Public Forums

2011-05-17T11:21:00.000-04:00

This is from Washtenaw County Special Education Information. To receive regular e-mails on special education events and meetings, contact WCSEI at familysupport@wash.k12.mi.us or view notices here.

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Join elected Michigan State Board of Education members at one of several regional education forums. The forums are an opportunity for education stakeholders to meet with State Board of Education members, discuss current education conditions, reform and budget proposals, and the future direction of education in Michigan.

Forum Dates and Locations
West Michigan

Monday, May 23, 2011, 4-6 pm: Grand Rapids Community College, Devos Campus
415 Fulton Street, Grand Rapids

Parking information here

On-site contact: Kathy Mullins, GRCC, kmullins@grcc.edu

Southeast Michigan
Wednesday, May 25, 2011, 4-6 pm: Macomb Community College – Center Campus
Professional Development Center, University Center
44575 Garfield Rd, Clinton Township

On-site Contact: Jennifer Anderson, MCC, andersonje@macomb.edu.
Attendees should report to assembly hall. The closest parking for visitors is in lot 3 or lot 5B as indicated on the campus map.

Thursday, May 26, 2011, 4-6 pm: Ann Arbor, University of Michigan League
Hussey Room, 911 North University Avenue, Ann ArborOn-site contact: Marcy C. Delano, mdelano@umich.edu
Parking map

Central Michigan
Tuesday June 7, 2011, 4-6 pm: Central Michigan University, Mt. Pleasant
Voigtman Family Seminar Room - Room 413
CMU College of Education and Human Services Building
Campus map

On-site Contact: Jen Cotter, CMU Development. 989 774 1554

Events are open to the public. Participants are invited to make
written or oral comments.

For more information on the forums please contact:
John Austin, State Board of Education President, jcaustin@umich.edu
Marilyn Schneider, State Board Executive, schneiderm@michigan.gov

State Board of Education
The State Board of Education is the state-wide elected body charged by Michigan’s Constitution to provide leadership and supervision over all education, determine K-12 standards, curriculum and teacher qualifications, and make recommendations to the Legislature and Governor on needed education policy and funding. The State Board also appoints the State Superintendent of Public Instruction.

Planned community for adults with DD in Jacksonville, Florida

2011-05-16T12:39:00.005-04:00

An article in The Florida Times-Union (jacksonville.com) reports on a project by The ARC of Jacksonville to build a 32-acre community for people with developmental disabilities:

"The Hodges Community would include independent and semi-independent living, as well as recreational and transportation opportunities and a community center. It is set to break ground in 2013 and would take five to 10 years to build."

The land was donated by a group of families in 1969 with the stipulation that it go to help people with developmental disabilities.

The article also says that, "Plans for the community will include different types of housing, including condominiums, apartments and houses and a few small group homes. Families will be able to choose from a 'menu' of options depending on the person's need." The Jacksonville ARC also contemplates having facilities such as soccer fields for use by the general public to encourage interaction with residents.

Parents and the ARC of Jacksonville enthusiastically support the plan. Apartment-living has not been successful or possible for many adults with DD and parents hope that the support of a planned community will increase the likelihood of success.

There have been objections to the plan from an organization called Henderson Haven that provides advocacy and community services to people with developmental disabilities. Lee Henderson, executive director of the organization, complains that this is a step backward toward segregation. Full inclusion with supports should be the goal, rather than another form of accepted segregation, as he characterizes the planned community approach.

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Objections have been raised with similar projects in Florida and other states. In my opinion, the objections to housing and services that group people with disabilities together do not hold water. Communal living situations are not necessarily discriminatory and segregating as critics claim, if they are appropriate to the needs of the individual and freely chosen over other options. Even the choice of an institutional option (an Intermediate Care Facility for the Mentally Retarded/Intellectually Disabled - ICF/MR) is supported explicitly by the Supreme Court Olmstead decision.

The use of the Medicaid Home and Community Based Services waiver that allows states to provide services in the community for people who are otherwise eligible for an ICF/MR, must give the individual the choice of an ICF/MR or have the written consent of the eligible individual or the person's legal representative to "waive" the institutional option.

The idea that all people with developmental disabilities can be successfully served using community resources in community settings is at best unproven and at worst demonstrably false. Abuse, neglect, and exploitation can happen in any setting, not because of the size of the setting or how it is organized, but because people with developmental disabilities are especially vulnerable to abuse, neglect, and exploitation. That mistreatment, criminal or otherwise, occurs in community settings is documented in grim detail here.

In Florida, there is a waiting list of around 20,000 people with DD who go without services. According to the Web site Left Behind in Florida, the waiting list makes up 40% of all families who have a family member with DD who is eligible for assistance.

A planned community is one more option from which families may choose and should not be seen as competition to fully inclusive settings that many people can benefit from. Projects that originate with the individuals and families who need services and garner support from a wide variety of community organizations are the most likely to succeed, the most likely to use resources wisely, and the most likely to be accepted by the community at large. Here is an example.

There is no shortage of ideas for improving the lives of people with developmental disabilities, but advocacy groups that deliberately narrow the choices based on their fervent belief in an unproven ideology are an impediment to a system that can truly meet the needs of the full range of people with DD, especially those who are either not served at all or inadequately served by our current system.

Life and survival with a profoundly disabled child

2011-05-07T22:12:00.001-04:00

I just read a review in the New York Times (5/5/11) of a book called "The Boy in the Moon". It is a memoir by Ian Brown about his profoundly disabled son Walker and how he and his family have struggled with this extraordinary child who has a rare genetic disorder. This is as good an illustration as any that we need a full range of services and residential options for children and adults with developmental disabilities, if we are going to serve everyone, including people like Walker.

Here is an interview with the author:

Understanding Michigan's HCBS Waiver for developmental disabilities

2011-05-05T11:33:00.003-04:00

After wading through a swamp of information about Medicaid waivers for people with developmental disabilities, I have come up with the following summary. I am no expert on this and any additional information, corrections, or comments are welcome.

The CMS (Centers for Medicare and Medicaid Services) is asking for comments on proposed changes to Home and Community Based Services waivers. States apply for waivers of specific parts of Medicaid law so that they can use Medicaid funding for targeted groups of people with disabilities, who "but for the provision of such services" would require the level of care provided in a hospital, a nursing facility, or an intermediate care facility for the mentally retarded. These services are considered to be "medical assistance" and must be provided to eligible individuals in accordance with a written plan of care. The costs for such services must not exceed the estimated cost of providing services in an institution (a hospital, nursing facility, or ICF/MR).These waivers to the states are called 1915(c) waivers because they are described in Sec. 1915(c) of the Social Security Act.

Michigan has several waivers and demonstration projects funded by Medicaid. The HCBS waiver for people with developmental disabilities is called the Habilitation Supports Waiver (HSW). Waiver funds go to Community Mental Health agencies to provide an array of services for eligible adults with developmental disabilities. Michigan has a specific number of HSW slots approved by the CMS per fiscal year. The assignment of slots is managed by the Michigan Department of Community Health. Each PIHP (that's the Washtenaw Community Health Organization for Washtenaw, Livingston, Lenawee, and Monroe Counties) has an annual allocation of active enrollments that cannot be exceeded. The need for waiver services must be written into the persons plan of service developed through the person-centered planning process.

If you google "Michigan HSW overview", one of the top items that comes up is a 2010 Powerpoint presentation by the Michigan DCH that includes detailed information on the 1915(c) Habilitation Supports Waiver and the services available.

Many families of even the most severely developmentally disabled adults do not know that the waivers exist. When they are informed, they often struggle with mental health agencies to get even the most basic needs of their loved-ones met. So the waiver is no panacea, but to begin applying for waiver services, contact your local community mental health agency. If you have an adult developmentally disabled family member, it is possible that he or she is already covered by the waiver. You may have been asked to sign a form to voluntarily waive the right to services in an ICF/MR (Intermediate Care Facility for the Mentally Retarded) in exchange for community-based services under the waiver. Community Mental Health agencies can be stingy about revealing much information about the waiver because you might actually want and need those services!

Now that you have some information on how waivers are supposed to work, you can try to figure out what the federal CMS is proposing to change and how it will affect you and your family member.

I will have future blogposts at the The DD News Blog on the specific changes that are proposed. You have until June 14th to submit comments to CMS.

Here is a link to information on Michigan's specialty services waivers that list services available under each waiver and who to contact for more information.

For a complete list and explanation of waiver services go to the Michigan Medicaid Provider Manual and scroll down to Section 15 - Habilitation Supports Waiver for Persons with Developmental Disabilities

Overview of housing possiblities for people with autism

2011-04-29T16:03:00.003-04:00

I received a comment on my recent blog post on the CMS proposed regulations for HCBS waivers. Not only is the comment insightful, but it includes a link to a report on housing possibilities for people with autism that anyone interested in this issue should look at.

Here is the comment:

It appears to me that the proposed change is a hatchet rather than scalpel approach as it relates to HCBS Settings. The risk is that a very narrow interpretation of what "community" and "appropriate to their needs" mean will prevent development of specialized group homes or small, campus like developments in non-urban areas. The elimination of these choices will particularly fall hard on adults on the autism spectrum disorders who, any of the too few existing providers will tell you, very often require lower staffing ratios, higher degrees of support, and very specialized, highly structured programs and facilities. There is an acute need to create more housing stock and programming for adults with autism and this proposed reg looks like it'll kill development. For more on what the autism community actually wants, please take a look at the "Opening Doors" report: http://www.autismcenter.org/documents/openingdoorsprint.pdf

I briefly looked over the Opening Doors report from the Southwest Autism Research & Resource Center (SARRC). The report is packed with information on a full range of housing alternatives, funding sources, model programs, diverse living arrangements, considerations for design of housing and living spaces, and much more. Any individual or organization thinking about developing housing and living arrangements for people with autism or any other disability, for that matter, should take a look at this.

Thank you, anonymous, for taking the time to share this information.

Proposed federal regulations on Home and Community Based Services: Is it more flexibility or fewer services?

2011-04-27T22:16:00.010-04:00

The Centers for Medicare and Medicaid Services (CMS) has proposed regulations that will affect how Habilitation Supports Waivers (HSW), as they are called in Michigan, will be administered and what they will fund. Even if you have never heard of the CMS, the actions of this federal agency can have a significant effect on services available to your disabled family member and how they are provided.

The Habilitation Supports Waiver now funds a variety of services, including Community Living Supports, vocational and skill-building programs, day programs, services in unlicensed supported living settings, and services in group homes. But this could change.

Here are some of the things these proposed regulations would do:

They would allow the states to apply for waivers covering a combination of groups, rather than targeting specific groups in each waiver, such as people with mental illness, or people with developmental disabilities and mental retardation, or people who are disabled and aging.
They would disallow certain settings, because CMS has decided they are not "integrated in the community". A setting is not integrated in the community if it is "located in a building that is also a publicly or privately operated facility that provides inpatient institutional treatment or custodial care; in a building on the grounds of, or immediately adjacent to, a public institution; or a housing complex designed expressly around an individual's diagnosis." or "has qualities of an institutional setting", as determined by the Secretary of the U.S. Department of Health and Human Services.
The proposed regulations also add requirements for person-centered planning that seem not to recognize the limited abilities of some individuals to direct their own person-centered planning process. Also, the person-centered plan would reflect services and supports to assist the individual, both paid and unpaid, and be signed by all individuals responsible for its implementation.

Unanswered Questions:

Are there safeguards to prevent people with incompatible behaviors and disabilities from being placed together?

Are families who provide so-called "natural supports" now subject to regulation by CMS?

Is there any role for guardians and families, other than as unpaid service providers?

Is it "increased flexibility for states" or fewer choices for people with developmental disabilities?

Could these regulations take services away from your family member?

Comments on the proposed regulations may be submitted to CMS through June 14, 2011.

Here is a link to the proposed regulations.

Michigan group home for DD adults built on campus of retirement community

2011-04-25T11:18:00.001-04:00

Faith House, a new 7,243-square-foot group home for men with developmental disabilities, has opened on the campus of Covenant Village of the Great Lakes, a continuing care retirement community in Grand Rapids, Michigan.

This is from the press release for the opening:

"Covenant Village donated a little more than half an acre to build the seven-bedroom, seven-bath, ranch-style home. It includes a spacious family room, a completely outfitted kitchen, a two-car garage and a backyard deck. The lower level has a two-bedroom apartment for live-in managers who are available day and night. Residents live together, yet independently, in a supportive structure.

"As part of the Covenant Village family, Faith House residents can enjoy the same 40-acre wooded campus as Covenant Village’s senior adults. Faith House residents can access many of the community’s facilities. Covenant Village also offers its Faith House neighbors intergenerational, volunteer and work opportunities...

"The goal of Covenant Enabling Residences of Michigan is to provide a safe, caring environment for high-functioning developmentally disabled adults. Individualized, carefully monitored programs challenge residents to reach their potential through education, training and the development of social skills. In addition to Faith House, Covenant Enabling Residences of Michigan also oversees Mary’s House and Joseph’s House. Located in Muskegon, one provides a residence for women and another for men."

Funding to support Enabling Residences of Michigan comes from:

Federal grants and Social Security funds
State/local funds
Private pay
Residents' earning
Special gifts from churches
Volunteer and monetary support from families and friends of residents

Follow the links for more details on these residences and contact information.

Michigan Health care providers: It’s OK to say you're sorry

2011-04-21T11:25:00.001-04:00

An article in the Detroit Free Press, 4/20/2011, reported that a new state law will allow health care providers to offer compassion to patients without fear that expressions of sympathy will be used against them in a lawsuit.

According to the article and the Senate Fiscal Agency, states that have "I'm sorry" laws have fewer and smaller malpractice claims than other states and medical institutions that offer apologies with financial settlements. The law would not shield health care workers who admit medical fault or negligence.

The article notes that the University of Michigan Health System reported "its average cost of lawsuits was cut in half and patient satisfaction increased after it adopted an 'I'm Sorry' policy nearly a decade ago."

I can vouch for the success of the University of Michigan's policy. My son was in the ER one night for over six hours when we discovered he had been mistakenly discharged several hours earlier while he was getting X-rays. I was not planning to sue the U of M, but I was plenty angry that Ian went home without a diagnosis for what turned out to be a broken knee-cap.

I wrote a letter to Patient Relations and received a prompt reply. Instead of going into a defensive crouch and denying that a problem existed, Patient Relations investigated the matter and admitted that a number of things were handled poorly. They had talked to staff, and were retraining them to follow procedures to prevent this from happening again.

If you have complaints about the U of M Health System, you can contact Patient Relations in the following ways:

Walk-in: The Patient Relations office is located in University Hospital, Room UH 2B228, and open Monday through Friday, 8 a.m. – noon and 1-5 p.m.
Phone: Call 734-936-4330 or toll-free 877-285-7788.
After hours, weekends & holidays: Call 734-936-4000 and ask to have a House Manager or Administrator-on-Call paged.
Online: Fill out a secure, confidential online form

The Patient Relations Website is here.

Community Resources: Heated pools at the Romulus Athletic Center

2011-04-15T16:58:00.004-04:00

It is usually hard to find places that can accommodate my sons for fun recreational activities, but today I discovered a great place for people of all sizes, shapes, and degrees of disability. A gang of kids from Ian's school, High Point School in Ann Arbor, took a field trip to the Romulus Athletic Center to swim and play in their water park.

Water temperature is always a concern for people with severe physical disabilities, even for Ian. He is relatively beefy compared to some of his classmates, but can't tolerate anything that is colder than a warm bath.

The Lazy River Pool, heated to about 88 degrees, has a gentle current that flows around a 240-foot loop and is the closest Ian has every been to river rafting or body surfing. It is also great exercise for people who can walk against the current. Inner tubes are available. Many of the High Point kids use flotation devices that keep their heads above water, but allow them to move freely underneath the surface.

The Splash Pool, heated to about 86 degrees, is a large wading pool with lots of surprises, including intermittent geysers, a 150-gallon tipping bucket, a water curtain, and numerous sprayers and water jets. The sound effects are enough for me, but even very young children seemed to be having a wonderful time.

A four-lane Lap Pool, heated to about 80 degrees, is available for real swimmers who can handle deep water (10 feet at one end).

The Hot Tub/Spa is the biggest hot tub I have ever seen. It is heated to 103 degrees and has numerous water jets and bubblers. Children must be at least 16 years old to use the Hot Tub.

Then there is the two-story, 120-foot long water slide (at 86 degrees). Fortunately, it was not open today. There were a number runners and darters in the High Point group who would need to be carefully supervised to even get near this contraption. I'm sure it is thrilling for the right group of people.

The water park has a chair lift that is always available with pool staff to get people in and out of the pool. There were at least two lifeguards watching at all times that we were there. Most of the pools are accessible by either ramps or shallow steps.

The RAC is owned by the City of Romulus and is located near the Detroit Metro Airport - very easy to get to from I-94 on the Vining Road exit. Fees vary depending on age and residency. A one-time fee for non-residents is $10. The center also has basketball courts, exercise machines, a climbing wall, a cafe and snack bar, a day-care center, an indoor track for running and walking, and many classes and fitness programs.

Who knew?

Announcing DD Advocates of Michigan

2011-04-04T09:26:00.001-04:00

from Ed Diegel,
Advocates for Persons with Developmental Disabilities in Wayne County.
ddadvocates@gmail.com
and now at ddadvocates.com

We are announcing the formation of a state-wide network to be known as DD Advocates of Michigan. We anticipate that this state-wide network will help us broaden our reach and improve our effectiveness as a community building, process improving, effective lobbying, common sense driven advocacy organization!!

Why is the ddAdvocates of Michigan Coalition being formed now?

The State Wide Network is being developed this year 2011 in an attempt to grow and strengthen the grass roots support base for persons with Developmental Disabilities in Michigan. We realize that

Because most service delivery is local and because many families of persons with Developmental Disabilities have their hands full caring for their own loved ones, we do not often understand the local service delivery system and often have not had a unified voice when speaking to local, state and national officials.

In addition, we have no state wide and in some cases county wide medium for sharing concerns and ideas, identifying unmet needs and celebrating the many outstanding programs, people and projects that Michigan citizens with disabilities enjoy,

Finally, we are not well informed of policies developed and being developed and being interpreted (sometimes differently) at the national and state levels which will impact the futures of our loved ones.

In the face of unprecedented fiscal uncertainty, political turnover and policy interpretations at the national, state and local levels it is imperative that we families and other advocates find a common ground and do the best grass roots lobbying possible on behalf of persons with Developmental Disabilities in Michigan.

Please read the Press Release at http://ddadvocates.com/2011/03/30/dd-advocates-of-michigan-press-release/ and while you’re there, leave a comment welcoming our new partners from Washtenaw, Livingston and Ottawa Counties.

Thanks for all you do!

Ed Diegel

New DD Advocates of Michigan links to Facebook and Twitter!

Michigan special education for students 22 -26

2011-04-01T11:43:00.003-04:00

The Michigan budget process for the 2012 fiscal year is underway with significant cuts to education on the table. In times of financial stress, special education programs that serve students from 22 -26 years old become an easy target for budget slashers, especially those who know next-to-nothing about the students served and how highly these programs are valued by both students and their families.

Special education for disabled students over 21 years old who cannot complete a regular high school curriculum has been mandated in Michigan since 1971 in a law that pre-dates the 1975 federal special education law now known as IDEA. Most of these students (there were about 3200 of them statewide in the 2009 school headcount) have moderate to severe disabilities and, were they not in school, would require intensive services from the community mental health system and other agencies. There are higher functioning students who also fall into this category for a variety of reasons, but the vast majority have moderate to profound developmental disabilities.

It is true that no other state extends special education beyond the age of 21, but if these programs were significantly reduced or eliminated, it is difficult to believe that the cost and disruption to students and their families would be worth the savings, if any, to the state. There have been some assertions that these programs impede the transition of students to their communities and the services they will need later in life. These programs, however, are not compulsory and for those who participate there are built-in protections in special education rules to assure the right to appropriate services for individual students.

The Washtenaw Intermmediate School District (WISD) offers a variety of programs for students at all levels, many of them based in local communities and focused on skills needed by individuals to move on with their lives. Students like my son Ian who will graduate in June from the program at High Point School in Ann Arbor, have benefited over the years from the remarkable skill with which the teachers, aides, and other professionals work with students with even the most profound physical and mental disabilities.

The transition from school to our chronically under-funded and fragmented system of services for disabled adults is described by many families as similar to "jumping off a cliff". The experience would be no less painful when your child is 21or 22 than when he or she reaches the age of 26.

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As far as I know, there is no bill in the state legislature yet that proposes to eliminate or change these programs, but that does not mean that it couldn't happen. There is one written proposal to significantly change educational programs for this age group that comes from the Michigan Association of Administrators of Special Education (MAASE). I will comment on this later.

Now is the time to take action!

The legislative Spring Break starts March 28 and lasts to April 11, 2011. It is important that each of us contact our legislators this week.

Tell them about what services are important to you and why.
Remind them that persons with Developmental Disabilities are among the most vulnerable in the State.
Tell them you are counting on them to protect programs

In addition, ask that your legislators keep you informed of any proposal to change state law and request that there be public hearings to allow students and families to make their views known if any changes are proposed.

You have the most influence with your own State Representative and State Senator. Find out who they are, if you do not already know. Click here for information on Washtenaw County state legislators.

Additional suggestions to get your message across to your legislator: Find out who in the legislator's office handles special education and other disability issues. Talk directly to that person and send written comments to relay to your legislator. Find out if there are events for constituents during the Spring Break and meet your legislator in person. Follow up later with a phone call to ask if there is any new information on legislation or hearings on these important issues.

A drug to prevent premature birth priced out of reach for most women?

2011-03-22T11:22:00.004-04:00

[Premature birth is a significant risk factor for cerebral palsy and other disabilities]

The Detroit Free Press featured an article on March 21, 2011, (Drug price for a safe pregnancy: $30,000 by DFP medical writer Patricia Anstett) about a drug that has been effective in reducing premature births and has been available for pregnant women since 2003. The cost has been $200 for a regimen of 20 injections.

The Federal Drug Administration has granted final approval for Maken, the brand name of the drug that is now produced exclusively by Ther-Rx, a subsidiary of K-V Pharmaceutical of St. Louis. The drug has been designated an orphan drug (benefitting fewer than 200,000 people) which gives special incentives so that the drug company can make money on it. A regimen of 20 injections will now cost $30,000.

The pharmaceutical company has created a financial aid program to help poor women get the drug for free and others to obtain discounts, but the high price may deter Medicaid from paying for the drug and generally reduce access to the drug by pregnant women who need it.

The Website "A Healthier Michigan", sponsored by Blue Cross Blue Shield of Michigan, posts an article, Inflated Drug Price Lands Pharma Company in Social Media Crisis, discussing the PR problems the drug company is facing with the launching of a facebook page opposing the exorbitant price increase.

More background on the story is available in an article from the St. Louis Dispatch from March 10, 2011. It turns out the company that has exclusive rights to market the drug did not invent it. The new cost of the drug will make it more expensive to use the drug to prevent premature births than to not treat women and pay the added costs of the premature births that will occur.

Just one more clue as to why health care costs are so high.

Community Resources: Waiting for spring at the Botanical Gardens

2011-03-21T11:13:00.005-04:00

Anyone who has spent time with my son Danny knows that his mood can fluctuate wildly, between sublime and exuberant joy to extreme irritation and frustration. Even on a good day, he is often cranky. Danny cannot communicate in any specific way about what he is feeling or why he feels the way he does. My educated guess (after 34 years) is that his hypersensitivity to touch and sometimes sound, combined with discomfort related to his severe cerebral palsy including gastrointestinal problems, have a lot to do with it. Danny seems to know, however, what makes him feel better: if he could, he would spend most of his time sitting outside in his wheelchair, listening to the birds, and breathing fresh air.

Winter is a rough time of year for Danny, but we have found an almost perfect place to take him to make the wait for warm weather a little easier. The University of Michigan Matthaei Botanical Gardens in Ann Arbor are full of all the sensory experiences that Danny can appreciate. Although Danny has very little functional vision, he can hear, feel, and smell all that the greenhouses have to offer.

In the tropical greenhouse, the air is warm and humid. There is a fish pond with water dribbling from it and a relatively large water fall whose sound sends Danny into a fit of ecstasy. We enjoy the lush displays of orchids, the banana trees producing one of Danny's favorite fruits, and we see and smell the new green growth and flowering tropical plants. We have contributed a couple of overgrown trees to the Botanical Gardens that we visit on each trip - a Key lime tree that we started from seed and a Plumaria, both from Florida.

The temperate greenhouse is cooler but also light and spring-like. It has a koi pond with water dripping over ferns into a pool. I always stop by the rosemary bush to give Danny a whiff of rosemary and pull gardenias or other sweet smelling flowers close enough for him to inhale. The third house is a dry desert environment that is cooler and houses exotic cacti, Spanish bayonets, Century plants, and other oddities.

Danny can hear the sounds of people milling around, especially small children who delight him with shrieks and chatter. On this particular Sunday, there is something like a scavenger hunt going on where children mark off items on a list of objects and plants that they discover on their route through the greenhouses. As an added bonus, Danny discovers that in the desert house there is black sheet metal along the walls covering up a heating apparatus. Danny finds that it is at wheelchair height and begins pounding on the sheet metal with his right arm. (He also does this when he gets near metal file cabinets or large cardboard boxes as a way to express his inner rowdy nature.) I let him bang on the metal until it gets so loud that some of the children look alarmed and begin staring. There is plenty of room in the greenhouses to move Danny past the temptation to bang on sheet metal, and so we move on. It's not nice to frighten the children.

On our way out we walk through a fine mist that periodically sprays water to humidify the tropical plants. Danny loves the hissing sound the sprayers make and also appreciates the warm dampness that surrounds him.

The botanical gardens are such a delight, that I would hate to spoil the experience by claiming that it does anything to improve Danny's status in the community or that it in any way dispels the notion that some people with disabilities have problems that can't be overcome by high expectations. Watching Danny's infectious joy is enough for us and we suspect that it has not gone unnoticed by our fellow fans of the Botanical Gardens.

A user's guide to Community Mental Health, Washtenaw County

2011-03-17T23:09:00.000-04:00

"I go to meetings so you don't have to."

It has been almost two years since I began attending meetings of the Washtenaw Community Health Organization (Washtenaw County's Mental Health agency) and its various committees. Very often I am the only "outsider" there when important decisions affecting people with disabilities and their families are made. Fortunately, there are consumers of mental health services represented on the Board, but it still tends to operate on the abstract level of policy and funding and does not necessarily take into consideration factors you might feel are important.

There are many ways to make your voice heard. Every WCHO Board and committee meeting begins with an opportunity for public participation where you can say (almost) anything you want - it does not have to be on the agenda or otherwise under consideration by the Board. The meetings are formally run and as much as I may want to insert myself into the conversation during the meeting, that is not how things work. I have to stifle that impulse and plan to come back to raise issues that I think are important. Of course, discussions with staff and Board members before and after the meetings are always possible, and attending meetings regularly is a good way to find out who does what and who to talk to when specific questions arise.

The Executive Director of the WCHO, Patrick Barrie, is a former Deputy Director for the Michigan Department of Community Health. He knows a great deal about state policy, funding, and the politics of mental health services. His reports to the WCHO Board are informative and interesting, especially if you have a geeky need to know how the mental health system works.

The WCHO Board meets on the third Tuesday of each month at the Learning Resources Center at 4135 Washtenaw Avenue, Ann Arbor, near the intersection of Washtenaw Avenue and Hogback Road. Some of the items discussed at recent meetings include the restructuring of the WCHO organization to fix problems with the decentralizing and fragmentation of services and functions of the organization in recent years. For instance, Community Supports and Treatment Services (CSTS) had become an independent publicly-funded provider agency, but now it is coming more under the direct control of the WCHO to improve efficiency and control over services. Another issue is that after years of encouraging a greater choice in service providers for consumers, there are now too many providers for the WCHO to monitor effectively and there are questions about the efficiency of contracting with so many small providers.

Committee meetings that might be of interest to consumers include the Program Committee that meets monthly and the Quality Management Committee that meets quarterly. One of the issues facing the WCHO is getting a handle on whether the programs offered are of value to consumers and of sufficient quality to meet their needs. Part of the reorganization of the WCHO will provide the committees with information they will need to make this determination. In addition, the Finance Committee approves and oversees contracts with the WCHO and focuses on funding issues.

The Affiliation Committee is one of the most interesting to me, as it involves Board members and staff from Washtenaw County plus the three other counties (Lenawee, Livingston, and Monroe) in the Community Mental Health Partnership of Southeastern Michigan. State issues concerning mental health funding and policy come up frequently for discussion. The state organization representing Community Mental Health Boards, the MACMHB, comes in for some criticism with many CMH Boards feeling that the MACMHB does not do enough advocacy on behalf of local CMH's and has become instead a mouthpiece for the Michigan Department of Community Health. The Affiliation is evaluating its role in the MACMHB and will be offering recommendations for improvement of the organization. The Affiliation Committee also approves policy changes for the recipient rights office and assesses the overall fiscal health of the four mental health boards.

The Recipient Rights Advisory Committee meets quarterly to go over reports that analyze incidents of abuse, neglect, and exploitation of mental health consumers. The committee takes into consideration special areas that need scrutiny such as the under-reporting of incidents by service provider staff and incidents in supported living (unlicensed) settings. This committee also serves as an appeals committee to hear appeals brought by or on behalf of WCHO recipients regarding Rights investigations. The recipient rights committee members tend to touch on basic issues that we are all concerned about - the safety and well-being of our family members wherever they are receiving services.

For information about the WCHO Board and committee meetings, check the Washtenaw County Calendar of Events. The calendar includes meetings for all county government boards and committees.

To receive information on Board and committee meetings prior to the day of the meeting, e-mail Suzanne Gondeck at gondeks@ewashtenaw.org .

Oh, Danny Boy

2011-03-16T23:41:00.001-04:00

Open house: Ann Arbor High School for students with high-functioning autism

2011-03-15T15:50:00.006-04:00

This is from the March 2011 issue of A Different Path, a newsletter for families with school-age special needs children in Washtenaw County.

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Veritas Christi's Open House

Could Veritas Christi H.S. be right for a child you know?

If your child or a child you know struggles with distractions at typical schools, has trouble connecting with teachers in a large classroom or for whom social issues detract from their learning, then VCHS may be worth a look. Matthew Landrum, chair of the English department, says that currently no class has more than 5 students, and the school maximum is 8 per class.

He says the school has students diagnosed with Asperger's and others for whom the stress of a hundred kids in the hallway between classes was deterring their academics. He says there is more teacher attention, teachers stay after school and most students finish their home-work at school..

The Open House is

March 20th (Sunday) and March 27th (Sunday)

from 11 a.m. - 3 p.m.
410 S. Maple Rd., Ann Arbor, MI

The school is always open to visitors and more information can be found at the Veritas Christi Website.

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More on A Different Path: This is a newsletter that includes heartfelt articles by and for parents, siblings, and friends of people with disabilities. It also includes announcements of events and other valuable information. If you want to receive your own copy of this newsletter by e-mail attachment, contact beestange@comcast.net.

This is all done by volunteers. Donations are always welcome. Send to:

Different Path
P.O. Box 8276
Ann Arbor, MI 48107-8276

Think Summer

A parent's impassioned plea to the ADD: Don't force my son to live by your rules!

2011-03-04T19:29:00.002-05:00

These are comments submitted to the Administration on Developmental Disabilities by a Michigan parent:

I understand your passion to include people with disabilities into the fabric of our society. I commend your desire to reverse a long history of hiding these individuals away from public eyes out of shame and an unwillingness to accept the knowledge of their very existence.

Unfortunately - in your zeal to right this wrong and insist that persons with disabilities have rights and access to all the facets of society previously denied them - you are missing a HUGE point.

To force your solution on every person with a disability - regardless of their interests and VERY real, legitimate needs - YOU are doing the same thing - taking away the rights and choices of these people to NOT have to live the way you want them to.

Who are YOU - people who do not know my son - a wonderful, 20 year old, severely physically and cognitively disabled person who needs complete care - to say that he must be isolated from his peers by shuttering the doors of programs that are designed to engage him at his level! Who are you to say that a group setting for meeting his needs is inappropriate for him! His world is small because that is what works for him.

Trust me I know. For years I have imposed many of my expectations about his need for engagement and participation. I had him in full inclusion, I enrolled him in enrichment classes, I employed therapists beyond the school to help him reach higher. And while I am glad that we did this, and I think he did benefit for a while - the gap between his speed and capacity and the speed and capacity of the world around him became greater and greater. And it became clear that he was not happy with these activities.

Now he appreciates a self-contained class in school, or spends time with family or at a group center in our town. His world is much smaller - and slower and it is an excellent fit for him. This is where he has his needs met best and this is where he is happiest.

Your arrogance - that you know better what he needs and what is best for him and therefore have the moral authority to insist that this is not an acceptable setup diminishes him in the same way that world used to impose its expectations on people of this level of disability.

These revisions to close even small group homes and sheltered workshops DENY the very existence of my son. And the idealistic view that everyone can be a functioning participant in their own lives is not borne out in reality. For instance, I challenge you to meet him and teach him how he is going to have a bank account! Seriously? What are you talking about???

You insult him just as much as people who think too little of him by insisting that he can fit your model. Because that is just as much of a denial of who he is.

Again - I appreciate that your ideals are in the right place and that giving these solutions as options, even strongly encouraged options is great. But your perceived victory with these changes, eliminating legitimate options to meet the needs of this very real, very alive population will be a different kind of cruel for people like my son Alex.

I beg you to wake up and have more sense. Please do not deny my son or people who want and appreciate these environments to be forced to live by your rules.

Sincerely,
Annie Zirkel, mother and guardian of 20 year old Alexander Hagopian-Zirkel

Visit Annie's Website here and sample more of her writing.

COMMENT NOW on "Envisioning the Future" recommendations on developmental disabilities

2011-03-02T20:38:00.011-05:00

Last Fall, the federal Administration on Developmental Disabilities (ADD) held Listening Sessions in five cities around the country to hear public testimony on "Envisioning the Future" for people with developmental disabilities and programs funded by the federal Developmental Disabilities Act. In Michigan, those programs include the Michigan Developmental Disabilities Council, Michigan Protection and Advocacy Services, and the DD Institute at Wayne State University in Detroit. State advocacy organizations, including the ARC Michigan, UCP Michigan, and the Michigan Disability Rights Coalition, are recipients of DD Act funding through grants from the Michigan Developmental Disabilities Council.

The day following each listening session, the ADD held a stakeholder's meeting to prioritize recommendations for future DD Act program activities. These meetings were by invitation only and were were not open to the public. Stakeholders are presumably the agencies and organizations that receive DD Act funding. Their recommendations are summarized in this document.

Friday, March 4th, 2011 is the last day to submit comments on choice and other issues for people with developmental disabilities to the federal Administration on Developmental Disabilities Website.

Recommendations run amok

While many of the recommendations are reasonable and uncontroversial, some are decidedly anti-choice, calling for the elimination of congregate care and so-called segregated sheltered workshops (specialized community-based work programs) that many people with developmental disabilities need and want.

For example:

Promote access to community living services - “Develop and implement plans to close public and private institutions and segregated workshops” (p. 12. Note: The DD Act, the Americans with Disabilities Act, and the Supreme Court Olmstead decision do not require that institutions or other congregate settings close. Neither are specialized work settings for people with disabilities singled out for closure.)

Collaboration - “ADD and the Administration on Aging should jointly plan and pool resources at the Federal and State levels while maintaining the DD Act values. Caution against taking on any values/programs that involve congregation and segregation” (p. 13. Note: Whose values are we talking about? Some of the values of DD Act programs conflict with the rights of people with developmental disabilities to participate in making decisions about their own lives and to choose services and living situations based on their individual needs and preferences.).

Community Living - “Keep people with disabilities out of congregate institutions” and “Harness the supports and influence of The Arc” (p. 14. Note: the ARC Michigan supports the elimination of all specialized programs that serve people with DD in disability-only settings. Why promote the influence of this one organization over others?)

Family Supports - "Guardianship should be assumed as an exception -- there should be legislation to protect people with developmental disabilities." (p. 16. Note: There already is legislation to protect people with DD. Guardianship is a state issue governed by state laws. In Michigan, guardianship law protects individuals from abuse, exploitation, and neglect while promoting the maximum independence appropriate. Many advocates in Michigan promote an ideology that dismisses the idea that anyone is in need of these protections through guardianship.)

Self-Determination - "Make self-determination the overriding foundation in DD Act. ADD and the DD network must promote self-determination clearly and explicitly, applying quality standards that are universal to all people through the network, across the lifespan. Self-determination equals citizenship and control of supports/resources." (p. 18. Note: Self-Determination, a process for gaining more personal control over services and financial resources, is optional in Michigan and for many that process is not the best way to achieve the goal of appropriate services to meet the needs of the individual. There are other pathways to citizenship.)

Despite public testimony to the contrary, there is no recognition in this document that there are people with developmental disabilities who may not be able to work in integrated employment, live in typical community settings, or make decisions for themselves. This is an example of how little understanding of cognitive disabilities there is among some "stakeholders" :

Economic Self-Sufficiency - "Promote teaching all people with disabilities how to control their financial resources and supports (i.e., how to bank, file their taxes, how to control their resources for supports, how to open and maintain checking and bank accounts). This should apply to everyone, even if they have a severe disability." (p.20)

HOW TO SUBMIT COMMENTS:

To comment, prepare a simple statement in support of your views and objecting to recommendations that you do not agree with. If you have more extensive comments, you can upload a Word Document along with comments you enter directly. Give your name, city, and state.
Go on-line (directions below) and submit your comments. Keep a copy of your remarks for future use.
To post your comment BY FRIDAY, MARCH 4, click here.

Fill in the required boxes marked with the asterisk.

Where it asks you to enter the title of your submission --- that is what will appear at the top of your submission. Something like "Support the Right to Choose" or "One size does not fit all" will draw attention to the point you want to make.

To see other comments, click “What Others Have to Say” link

You can then type in your comments. There is no word limit. You can "copy and paste" into the comment section. You can also attach (“upload your document”) your document.

When finished, hit SUBMIT!.

Michigan governor's proposed budget: not all bad news for people with disabilities

2011-02-23T18:06:00.002-05:00

On February 17, 2011, Michigan's Governor Rick Snyder laid out his budget proposal for fiscal year 2012. FY 2012 begins October 1, 2011.

There is some good news in the proposal for people with developmental disabilities. This is from an AnnArbor.com report on the highlights of the governor's budget:

Medicaid eligibility is maintained and provider reimbursement rates are supported without reductions to preserve health care and access for those most vulnerable.
A Medicaid budget that is funded at $11.2 billion, reflecting the institution of a new 1 percent health care insurance assessment on all paid health care and dental insurance claims.
The preservation of over $1.4 billion in funding for programs that assist nearly 55,000 special education students, as well as $1.2 billion for core education programs such as services for academically at-risk students and adult education.

Schools and Universities, however, will be taking a big hit in the proposed plan. K-12 funding will be reduced by 5 % or $500 million. The state will encourage schools to adopt "best practices" that generate savings on medical benefits for employees and reduce spending on "non-instructional" services. It remains to be seen whether there are additional savings to be squeezed out of already stressed school district budgets.

Another problem is the "elimination of statutory revenue sharing payments for cities, villages and townships in fiscal year 2012 to be replaced with a new incentive-based revenue sharing program available to cities, villages and townships that meet state standards and adopt best practices." This amounts to a reduction of nearly one-third of revenue sharing funding available to local governments. Local governments will have less to spend on safety, fire protection, and other local services and the mental health system will have more difficulty serving people who are not eligible for Medicaid. They will not be able to shore up the mental health system to provide services that are needed but not necessarily mandated or covered by Medicaid. This exacerbates the problem of declining revenues from property taxes for local governments. A more detailed analysis of the impact on Washtenaw County is covered in an article from AnnArbor.com.

There will also be less money available for poor people with the elimination of Michigan's contribution to the Earned Income Tax Credit (EITC). Snyder says that the money saved will go into maintaining Medicaid and other services for the poor, but Stephen Henderson, a columnist for the Detroit Free Press has a good point: while the budget calls for eliminating tax breaks for wealthier people, "poor people will take a bigger hit, relatively speaking than everyone else". This will also effect small businesses, especially in Detroit where the EITC reduction will take $330 million out of the local economy.

In an interview with the Detroit Free Press, the Governor explains the thinking behind the balancing act that his administration did to justify the changes he is proposing. Last Sunday's Detroit Free Press editorial page, not known for its support of Republican budget initiatives, is surprisingly mild in its criticism of the governor's proposals. Michigan's budget problems have been long in the making and there is a tendency to hope, perhaps beyond reason, that these proposals will help.

The Governor's non-ideological approach to Michigan's problems and his eclectic method of problem-solving are mulled over by Free Press columnist Brian Dickerson in his assessment of the governor as "A mild-mannered radical". Dickerson foresees the possibility of attacks from both ends of the political spectrum, but says that "Snyder's ace in the hole is the voters' widely shared conviction that Michigan's fiscal disease cries out for nothing less than radical surgery."

So far, the governor appears to have avoided a full-frontal Wisconsin-style assault on public employee unions, but one can expect that local adjustments will inevitably lead to losses in wages and benefits for public agency employees, if the governor's budget is adopted.

White House Monthly Disability Call - 02/15/2011

2011-02-11T11:02:00.002-05:00

To make sure you get a chance to listen in on this monthly phone call with the White House on disabilitiy issues, try calling in 15 minutes early.

This is from Kareem Dale, Special Assistant to the President:

In order to help keep you more informed, we are hosting monthly calls to update you on various disability issues as well as to introduce you to persons who work on disability issues in the federal government. This month's topic will be on the President's budget as it relates to people with disabilities.

This call is off the record and not for press purposes.

We strongly urge and ask that you distribute this email broadly to your networks and list serves so that anyone who wants to participate and learn about the President's budget can do so.

Our next call will be Tuesday, February 15 at 1:00 PM Eastern.

The conference call information is below.

Dial in for listeners: United States: (800) 288-8974

Title: White House Disability Call (use instead of code)

Date of Call: 02/15/2011

Start Time: 1:00 PM Eastern

For live captioning, at time of call, log onto:

http://www.fedrcc.us//Enter.aspx?EventID=1710748&CustomerID=321

If you received this email as a forward but would like to be added to the White House Disability Group email distribution list, please email sfeuerstein@who.eop.gov and provide your name, email address, city, state and organization if applicable.

Again, please distribute widely.

Kareem Dale
Special Assistant to the President
The White House
1600 Pennsylvania Avenue, NW
Washington DC 20500
202-456-1111

Michigan Home Help Services for people with disabilities

2011-02-08T11:41:00.000-05:00

The Home Help Services Program is administered by the Michigan Department of Human Services and is paid for by Medicaid. It allows adults with developmental and other disabilities to receive help so that they can stay in their own homes or their family's home. Home Help funding is also given to people in supported living homes to supplement other services provided by the local Community Mental Health agency.

Home Help Services include preparing meals, clean-up and feeding, toileting, bathing, grooming, dressing, moving around the house, taking medicine, shopping, laundry, and light housework. People enrolled in the Home Help Services program employ their own provider who may be a friend or relative (including a parent if the adult-child is over 18 years old).

The number of hours paid for depend on a functional assessment of Activities of Daily Living and Instrumental Activities of Daily Living. The maximum amount of money available under regular home help services is $549/ month. Expanded Home Help Services for people who need more help pays up to $1300/month depending on the need for more services. Funding over $1300/month is possible with approval by the Michigan Department of Community Health.

To learn more about the program and to apply for benefits contact your local Department of Human Services. For Washtenaw County, contact:

Department of Human Services
22 Center St.
Ypsilanti, MI 48198
Phone: (734) 481-2000

If your funding for services is decreased or denied, you must be given an Advance Negative Action Notice (a notice that tells you why the action was taken and your right to appeal the decision). You have the right to appeal the decision through a Medicaid Hearing. If you ask for the hearing before the date the action is to go into effect, the service and funding must continue until a decision has been made by a Medicaid hearing officer. Here is a brochure explaining the basics of Medicaid Hearings.

As a guardian of a person in the Home Help Program, you may file for a Medicaid Hearing on behalf of the person, but you must send a copy of the Court Order from the probate court granting guardianship with your hearing request.

More information on Home Help Services is available in the Adult Services Manual. Click on the Independent Living Services Program Overview, Requirements, and Procedures (ASM 361, 362, and 363) for much more information on Home Help Services.

Michigan hearings on changes to special ed. administrative rules

2011-02-07T16:26:00.003-05:00

Think Spring

The Michigan Office of Special Education and Early Intervention Services will conduct public hearings to receive public comment on the following proposed administrative rules and documents:

    * Special Education Programs and Services Administrative Rules (2010-049 ED)
    * School Social Worker (2010-048 ED)
    * Notice and Consent Procedures
    * Due Process Complaint Procedures
    * State Complaint Procedures

For more complete information and links to the documents that are under consideration, see the MDE Website.

The hearings closest to Washtenaw County will be in Detroit on Monday, March 7, 2011 from 4:00-8:00 p.m. at Renaissance High School, 6565 West Outer Drive, Detroit, MI 48235. Phone: (313) 416-4600.

Written comments can be submitted no later than 5:00 p.m., March 18, 2011, to:

Public Comment
Office of Special Education and Early Intervention Services
Michigan Department of Education
P.O. Box 30008
Lansing, MI 48909
mde-ose@michigan.gov
Fax: 517-373-7504

There are many references in these documents to federal regulations under I.D.E.A. Here is a link to those regulations. You will find more federal I.D.E.A. resources from the U. S. Department of Education here.

Laws, rules, and regulations are generally not the first things parents with children in special education think about when they have a spare moment. We are all be better off, however, knowing something about them and how they apply to children and parents. It is not enough to have the laws and rules interpreted for us by others who may not have our children's interests at heart or who may have other agendas. Reading them and understanding them is one way to demystify the special education process.

Michigan parents settle lawsuit involving facilitated communication

2011-02-02T10:40:00.007-05:00

The parents of an autistic girl settled a lawsuit against the Bloomfield Hills, Michigan, police department last month for $1.8 million, according to an article in the Detroit Free Press.

Over three years ago, the father was arrested and accused of raping his 14-year-old autistic daughter based on accusations made through a widely discredited method called facilitated communication (FC). A facilitator, in this case a teacher's aide, guided the girl's hand over a keyboard while the girl supposedly typed out messages accusing her father of raping her repeatedly since she was seven years old. The father spent 80 days in jail and the mother was put on an electronic tether. The girl and her 13-year-old brother who has a milder form of autism were placed in foster care. The police, in a video-taped interview, tried to browbeat the brother into admitting that he too had been molested by his father. He was told that the police had video tapes showing this to be true, a story that turned out to be entirely fabricated.

In a related article, the Free Press reports that the parents' lawsuit against the Oakland County Prosecutor’s Office, the Walled Lake Consolidated School District and the Michigan Department of Human Services is still under consideration. Although the Oakland County lawyer argues for governmental immunity for his clients, the District Court Judge finds the facts in the case troubling.

The facts are indeed troubling:

There was no physical evidence that a rape had taken place.
The prosecution and the judge in the case accepted the girl's statements through FC as valid even though she functioned at the level of a two-year-old and did not talk. Even the prosecution's witness called to defend FC as a valid form of communication, did not believe the girl's charges and had warned the prosecution that her statements should be validated independently.
The girl's brother was interviewed by the police without notifying his guardian and without a parent or attorney present.
The primary objection to FC is that the communication is usually that of the facilitator and not the person who is being facilitated. The court still treated the girl's statements as evidence of a crime, reliable enough to have the father thrown in jail for 80 days.The case was dismissed after the girl was unable to answer even simple questions when her facilitator could not hear the questions being asked.
When the case was dismissed, the prosecution did not admit that they were wrong. Instead they said that the girl refused to testify because she was afraid.

We may never know the motivation for the actions of the prosecutor's office, the police department, and the school district. At least the parents have some compensation for this travesty that almost destroyed their lives.

Here are earlier posts on this case. MSNBC in 2009 had a blogpost called "Dark shadows loom over facilitated talk" which includes the Michigan case. It also gives a general overview of the origins of FC.

Transportation in Washtenaw County

2011-01-27T11:16:00.010-05:00

AnnArbor.com features an article today about plans for significantly improving public transportation in Washtenaw County. Three plans have been proposed by the Ann Arbor Transportation Authority (AATA). 20 community forums are scheduled from January 31st to February 23rd in communities all over the county to receive public input on the plans.

The three scenarios offer varying degrees of improvements in county transportation over the next 30 years. The basic plan, called "lifeline plus" calls for increasing the frequency of rides, expanding access to the transportation system, especially for people with disabilities and the elderly, expanding hours of operation, bus stop improvements, and expanding links to other city transportation systems. The two other plans offer further improvements and expansion that will provide more flexibility in the system with a view toward reducing suburban sprawl and promoting compact land use.

Transportation improvement planning has been underway for a year. After the forums, AATA will consider public input, pick a plan, and begin implementation.

The availability of reliable and accessible transportation is vital to improving access to jobs and social and recreational opportunities for people with disabilities. Get involved to find out how AATA plans will affect your disabled family member.

For more information, visit the AATA Website on proposed transportation plans for Washtenaw County and see the schedule for 20 community meetings to be held over the next month.

For more information on transportation issues and disabilities, contact Carolyn Grawi at Ann Arbor Center for Independent Living, (734) 971-0277, or email cgrawi@aacil.org .

Share any concerns you have about transit with Representative Rick Olson from York Township, Washtenaw County. He was recently appointed to the House Committee on Transportation in the Michigan House of Representatives. Phone: (517) 373-1792 ; E-mail: RickOlson@house.mi.gov .

No excuse for violations at Oakland County group homes

2011-01-25T12:08:00.003-05:00

This article from The Detroit News, "Repeated violations found at Oakland County group homes", January 10, 2011, is all too familiar. Every year or so a local newspaper features a story about group homes that could just as well have been written last year or the year before that or ten years ago. The story goes something like this: Group home residents live in squalid conditions, are subjected to mistreatment by group home employees, and are neglected to the point where they wander off and get into serious trouble with the police and their neighbors. It is also not unusual for an employee to claim, as happened in this case, that he or she was fired for trying to bring problems to the attention of his or her supervisors.

There are many group homes that provide excellent care and have none of the problems cited in this article. When the best choice for a person is to live in a group home, I think the best care for people with severe developmental disabilities is provided in homes that have strong family involvement and oversight, community support from local churches or other community organizations, and whose management welcomes and encourages this support. What families have to worry about are the many group homes that provide adequate care, but not much in the way of a fulfilling life for their residents and homes that provide neither adequate care nor much of a life for their residents and end up endangering the health, safety, and well-being of the people who live there.

Licensed group homes are operated under strict rules to assure safety and the protection of residents' rights. The caseloads of licensing monitors, however, have been increasing, bringing into question whether monitors can adequately do their job. In addition, administrators in the Michigan Department of Community Health have stated that they want to eventually eliminate group homes as an option for people with developmental disabilities. It is difficult to believe that the State will do much to improve the quality of failing group homes when they would prefer that they disappear.

There are things that families can do to improve the living situation of group home residents.

The first line of defense to protect a resident of a group home is to have a good person-centered plan and service plan that describe in detail all the services the person needs and how they will be delivered. Many problems go back to poor planning. Furthermore the plan of services must take into account the preferences and choices of the resident that are so important for the person's happiness and satisfaction with his or her living situation.

Most of the rights of recipients of mental health services fall under these broad categories listed in the Michigan Mental Health Code:

A recipient shall receive mental health services suited to his or her condition.
Mental health services shall be provided in a safe, sanitary, and humane treatment environment.
Mental health services shall be offered in the least restrictive setting that is appropriate and available.
A recipient has the right to be treated with dignity and respect.

Any violation of these rights can be reported to the local Recipient Rights Office. In Washtenaw County, Recipient Rights can be reached at (734) 544-3000. Anyone can make a complaint to recipient rights, whether or not you are related to the person involved. As a complainant, you should receive a written response to your complaint, written updates on the progress of the rights investigation, and a written summary of the conclusion of the investigation and the actions that have been taken to correct the situation.

A Rights Complaint form is available here.

Adult Foster Care Licensing provides an extra layer of monitoring and oversight for group homes and deals with the most serious rights violations and safety issues. These can involve the death of a resident, accidents or illnesses that require hospitalization, displays of serious hostility, self-inflicted harm or harm to others, and destruction of property. Also included in investigations are incidents involving the arrest or conviction of a resident and absence without notice.

If a resident has a guardian, the guardian must be notified in writing within 48 hours of an incident or event that triggers a licensing investigation. A licensing complaint form can be found here. In addition to the complaint form are rules for AFC homes and notice requirements when a complaint has been received.

AFC maintains a Website on licensed group homes. Look for Special Investigation Reports that go beyond routine licensing inspections for information that may indicate serious problems at a group home.

The best and most reliable monitors of group homes are family members and friends who drop in frequently, ask lots of questions, and do not let serious incidents go by without reporting them to the proper authorities.

Michigan advocates oppose choice - again!

2011-01-20T10:45:00.002-05:00

Michigan advocacy organizations have once again expressed strong opposition to the Choice Resolution adopted by the Michigan Association of Community Mental Health Boards (MACMHB). The Choice Resolution confirms the right of people served by our local community mental health agencies, including people with developmental disabilities, to live in the least restrictive setting that is appropriate to the needs of the individual and is the individual’s personal choice. It recognizes that there are differences in service preference among consumers and honors choice regardless of the individual’s philosophy of service delivery.

The Michigan Department of Community Health, with the support of state advocacy organizations, has stated its intent to limit and eventually eliminate all specialized services that serve people with disabilities in group settings (day programs, group homes, sheltered workshops, etc.). The Choice Resolution was a response to that threat and received strong support from families and other individuals alarmed by the policy direction of the MDCH. (Now is the time to encourage the new administration in Lansing to take a second look at these policies.)

The Choice Resolution was adopted by the MACMHB Executive Committee in August 2010 and was then voted on by the full membership of the organization during a state conference in October 2010 where it passed unanimously. The most recent letter from the advocacy organizations has been discussed by the MACMHB steering committee and will be responded to. The MACMHB continues to stand behind the Choice Resolution.

Until I can get this posted on line, here is the body of the advocates' letter, dated December 15, 2010, to Mary Anderson, President of the MACMHB.:

It is extremely disappointing to see the board Association adopt the position they did on the CHOICE (sic). What has been endorsed, implies poor stewardship of public monies and ignores best practices, evidence and years of progress in Michigan and even throughout the county (sic).

Your position attempts to modify "least restrictive environment" and skips altogether "most integrated setting" both of which are statutory requirements of the public mental health system. You're (sic) association maintains that any person, or in this case, any person's parent can choose whatever they want for their adult son or daughter. That could include another Mount Pleasant Center.

What is best for the person; what will accomplish legitimate public mental health ends; what is most effective; what is most fiscally sound; what follows the letter and intent of the law; none of these matter, and evidently neither does the research and data which indicate the superiority of small residential settings when it comes to choice.

It has become even more apparent that MACMHB, as a trade organization for providers, is willing to have a small, albeit loud, fringe group dictate their policy and the values of the organization; It is also apparent that your Association does not value the position of this state's leading advocacy organizations working on behalf of persons with developmental disabilities.

Without common values or principals, we obviously need to alter our common advocacy and support. Our past history of supporting the CMHSP and current PIHP system will need to be re-evaluated. If we do not share a vision nor seek the same outcomes, our paths must diverge. Sadly, we see no other way.

The letter is signed by Dohn Hoyle from the ARC Michigan, Glen Ashley from UCP Michigan, Norm DeLisle from MDRC, and Elmer Cerano from MPAS.

I look forward to more discussions on small, albeit loud, fringe groups dictating policy and values of their organizations to people with disabilities and their families.

Grandma Jane: February 20, 1916 - December 10, 2010

2011-01-16T14:29:00.002-05:00

Baby Ian and Grandma Jane

Jane Alexander Barker - Grandma Jane to Danny, Ian, Jennie and 12 other grandchildren - died on December 10, 2010 in Monterey, California. I will remember her fondly for her sunny disposition, her energy and determination, and her love for her large family and their devotion to her.

Jane was born in New York City. Her family moved frequently, spending time in Kansas City, MO, Miami Beach, FL, New Orleans, and then Orlando, FL. She married Roger Barker, "Grandpappy" to all those grandchildren, in 1939. Her life was filled with both sorrow and joy. Her third child, Jimmy, drowned when he was 16 months old. Her brother Elliot and his wife died in a plane crash a few years later, leaving behind two boys who Jane and Roger adopted into their large family.

Even with six children, Jane was an inveterate volunteer. She was a girl scout leader for 16 years and president of the "pink ladies" at Orange memorial Hospital in Orlando. One of her proudest accomplishments was establishing a day care center for single mothers and low-income families at her church.

Jane had deep roots in Michigan. In 1926 her father purchased a cottage on Walloon Lake in Northern Michigan where she spent summers as a child and came back again and again until her last visit two summers ago. Her beloved Tanglewood cottage was where she felt most at home.

Jane had many enthusiasms including knitting, needlepoint, sewing, weaving and embroidering. She was an avid reader, often sharing murder mysteries, historical novels, and seamy potboilers with her eldest son (who is also my husband). She became a computer geek, amazing one of her granddaughters with her ability to set up a new computer system on her own and her insistence that she have a decent internet connection before she moved to California at the age of 90 to live with her daughter. She also wrote three self-published memoirs in the 1990's: a memoir of her own life, a history of her husband's family, and remembrances of Wildwood Harbor on Walloon Lake.

Jane Barker was a survivor. With her family, she survived the 1926 hurricane that swept over Miami beach by getting up on furniture as water flooded under the kitchen floor. She later survived a tornado which struck the Georgia town where she went to college. She survived over 40 years of smoking cigarettes and then gave them up cold-turkey. She leaves us with her stories about her mother and father, her grandmother, various aunts and uncles, her numerous friends and acquaintances, and all the lessons that can be learned from a long life, well lived.

Grandpa Fred is 100 years old

2011-01-14T10:40:00.003-05:00

Before the New Year becomes the Old Year, I have to catch up on a few items.

My father Fred Howard - Danny, Ian, and Jennie's Grandpa - turned 100 years old on December 9th, 2010. He lives in Ann Arbor in an assisted living facility with my mother, who is only 97. Although he doesn't see or hear very well and can't get around without his walker, he is still holding doors open for women and children, making sure my mother gets her medications every day, and managing his life with as little interference as possible from the nosy people who keep coming by to check up on him.

I was lucky. My parents were always available in a crisis when Danny and Ian were younger. Mostly they kept me company when my husband would have to go out of town and I was stuck here alone with the kids. Come to think of it, those occasions were crises and if I hadn't had my parents' help, my sanity would have been in jeopardy. Even in recent years, when Ian was still living at home, although my father was not able to help much with actual care, he took over laundry duty, a task that kept him busy and feeling useful.

In his long life, he has always been busy and useful. He went to the University of Chicago on a full scholarship that he won in a city-wide writing contest in High School. He dropped out during his first year to become an actor until the depression hit and he had to come home and find a real job. He worked in bookstores and eventually met and married my mother who had a young son, my half-brother John. In World War II he joined the Army Air Force and flew missions over North Africa and Italy as a bombardier. He bailed out of plane over Sicily and sent my mother the parachute handle for Christmas that year.

He worked at the Library of Congress for 15 years after the war where he was on the team editing the Wilbur and Orville Wright papers. He co-authored with my mother a collection of wartime letters and later published a novel. After the Library of Congress, he worked as an editor for many years for publishers in the Washington, D.C. area. At the age of 77, he published a biography of the Wright Brothers called "Wilbur and Orville", a book that was highly acclaimed and for which he later won a Christopher Award.

Now that my parents are very old, I am seeing first hand the differences in how we deal with disabilities in old-age and developmental disabilities that occur early in life. For one thing, we don't do as much pretending with people who are elderly: we don't expect them to work after they have reached the point in their lives where that is no longer possible or desirable and we don't berate them for choosing to live in "congregate" facilities if that is where they want to live and will get the best care. We also don't showcase the healthiest and most capable people who have attained a great age and pretend that that is proof that everyone can attain the same level of functioning into old age if only we have high expectations and adhere to an ideology that denies any other outcome of old age. Living well to an advanced age has as much to do with genes and luck as it does with attitudes, expectations, and circumstances over which we have no control.

Fred and Janet with grandson and family