Thursday, December 20, 2012

How far have we come in preventing disabilities in Preemies?

The answer is mixed, according to an article in Disability Scoop, "Despite Advances, Many Preemies Still Face Severe Disabilities" by Michelle Diament, 12/11/12.

Neither one of my sons' disabilities were caused by prematurity. Although they both survived because of care given to them in intensive care neonatal nurseries, that care was not enough to spare them from lives with profound mental and physical disabilities.

After Danny was born in 1976, I used to see photographs and news stories about premature infants and others who had survived and thrived after overcoming extremely difficult circumstances at the time of birth. I noticed one day at the hospital where Danny was born - I think we were making one of our treks to see his orthopedic surgeon - a bulletin board full of photographs from a recent reunion of "graduates" from the neonatal intensive care unit. Hmm?, I thought. We weren't invited. (You see how petty I can be when it comes to a perceived insult to a child of mine.)

Among the children at the reunion, not one was in a wheelchair. One wore glasses but otherwise there were no visible signs that any of them had significant disabilities. In the crowd I hung out with, mostly parents whose children were similar to Danny, many of those children had done time in the same neonatal intensive care nursery. I have no idea if there was any deliberate plot to exclude children like mine from the reunion party - maybe their parents were too tired or just didn't feel like celebrating. But since then, I have always been somewhat skeptical about claims that we are making tremendous progress in preventing and treating severe disabilities.

The Disability Scoop article sites two British studies. One concludes that, "Survival of babies born between 22 and 25 weeks’ gestation has increased since 1995 but the pattern of major neonatal morbidity [the incidence or prevalence of disease in a population] and the proportion of survivors affected are unchanged. These observations reflect an important increase in the number of preterm survivors at risk of later health problems."  Another, in comparing outcomes between 1995 and 2006, concludes that "At follow-up the findings are mixed: there is some evidence of improvement in the proportion of babies who survive without disability, an improvement in developmental scores, and a reduction in associated neuromorbidity (seizures and shunted hydrocephalus), but no change in the rate of severe impairment."

Overall, there are more preemies who survive without any disability, and good for them, but the proportion of those with severe disability has remained the same.

Tuesday, December 18, 2012

Dual Eligibles - Why can't Michigan be more like Ohio?

Ohio, along with at least 25 other states including Michigan, has developed a plan to coordinate care for people who are eligible for both Medicare and Medicaid. Michigan's plan has not yet been approved by the Centers for Medicare and Medicaid Services (CMS), but CMS has approved Ohio's plan. Michigan's draft plan so far covers all populations in the state, including people with developmental disabilities, and is more ambitious and radical in its approach. The final plan will be reviewed by the Michigan legislature before it is submitted to CMS.

Ohio, wisely, I think, has limited its plan for Dual Eligibles geographically to 29 of its 88 counties. It will not include people residing in Intermediate Care Facilities for the Intellectually Disabled (ICFs/ID) or people who receive services through a Medicaid waiver (such as Michigan's Habilitation Supports Waiver for people with DD). Anyone will be able to leave the program at any time.

This information comes from the Capitol Insider, 12/17/12, a publication of the National Arc:

Medicaid – News for individuals who are dually eligible for Medicare and Medicaid in Ohio

The Centers for Medicare and Medicaid Services (CMS) negotiated the third Memorandum of Understanding (MOU) with Ohio to test a new model for providing person-centered, coordinated care to individuals who are eligible for both Medicare and Medicaid (dually eligible). Ohio’s demonstration will cover individuals who are dually eligible in 29 counties and will begin in September 2013. Over 100,000 dually eligible individuals will be eligible to receive their health care and long term services through managed care. Individuals with developmental disabilities, who reside in intermediate care facilities for individuals with intellectual disabilities (ICFs/ID) or receive services through a Medicaid waiver, will not be eligible for the program. The companies chosen by Ohio to manage the program are Molina Healthcare, Aetna, UnitedHealthGroup, the Buckeye Community Health Plan run by Centene, and an alliance between Humana and CareSource, a non-profit health plan. People will be able to leave the program at any time or choose another plan. Ohio follows Massachusetts and Washington in negotiating MOUs with CMS.

Here is more information on Dual Eligibles in Michigan.

2012 Holidays - Enjoy and Endure!

The Thanksgiving through New Year's day holidays at my house are often a time of crisis. So far this year, Grandpa landed in the hospital for a few days, then I came down with a contagious stomach flu which I shared with Grandpa and my husband, the front wheel of Danny's wheelchair froze up and threatened to fall off, and we still have a week to go until Christmas. One year on Christmas Eve, my husband brought Danny home in the van and then proceeded to launch him into the garage without the benefit of the lift being down. Danny was OK and enjoyed spending Christmas Eve in the Emergency Room, although my husband was simultaneously wracked with guilt and fuming because of the long wait in the ER. I know some families with medically involved children who rarely celebrate a holiday in any way that doesn't involve a life-threatening crisis, a seizure, or plans that have to be changed at the last minute to accommodate whatever emergency comes their way.

Insofar as is possible and practical, enjoy and endure the holidays.

Tuesday, December 11, 2012

Holiday edition of A Different Path newsletter

A Different Path newsletter has issued a holiday edition with
  • Success stories: Mattias, who has Asperger's Syndrome, thrives in a Cordon Bleu cooking class in Peru; Camela, the only Down Syndrome child at a local Catholic school, begins her second year; and an Eagle Scout with autism will be graduating from high school in 2013.
  • Advice and support: TalkAbility classes to foster communication in special needs children; Assistive Technology assistance from the Ann Arbor Center for Independent Living; and  heartfelt personal stories from parents of children with special needs.
A Different Path could use financial help right now. Tax deductible donations should be sent to: Different Path, PO Box 8276, Ann Arbor MI  48107-8276.

Contact the editor of A Different Path at

Wednesday, November 14, 2012

Medicare/Medicaid Eligibles: The Kaiser Report on State Plans and Michigan's Plan so far

Way back in 2011, Michigan was one of fifteen states to receive a contract with the federal Centers for Medicare and Medicaid Services (CMS) to develop a model to integrate the care of people eligible for both Medicare and Medicaid. (CMS is the federal agency that regulates and oversees Medicare and Medicaid.) Michigan was among the first 15 states to receive funds to develop a plan. By July of 2011, 26 states were participating in planning. A Report from the Kaiser Commission on Medicaid and the Uninsured from October 2012, summarizes and provides data on the plans from 26 states. 

Michigan's Dual Eligibles plan would affect about 200,000 people who are elderly, mentally ill, or physically or developmentally disabled and poor.  The purpose of the plan is to reduce costs and improve care. But the premise on which federal and state governments justify the idea that the share of spending can be reduced for the Medicare/Medicaid eligible population is  questionable. As stated in the introduction to the Kaiser Commission Report, "Dual eligible beneficiaries are among the poorest and sickest people covered by either Medicare or Medicaid and consequently account for a disproportionate share of spending in both programs." How is the share of spending disproportionate after one accounts for the characteristics of this population?

I think it is safe to assume that medical and hospital costs are generally too high and that we pay too much for prescription drugs and  medical devices and equipment. But almost half of the Medicare/Medicaid population are people under 65, many of whom receive Medicaid-funded mental health services through Michigan's Community Mental Health system.  Cost increases in areas covered by CMH have been relatively stable: 

"Per capita health care costs in the US increased by more than 5% per year between 2002 and 2009, with a total increase of 57% during that period. The public mental health system has seen an increase of approximately 2.2% per enrollee per year in that same period."
(from the MACMHB Guide to Integrated Care for Dual Eligibles)
Finding ways to control the high cost of medical care is laudable, but the fear by individuals and their families who receive services through the CMH system is that reducing the costs of mental health services can only be achieved by reducing the number and quality of services available and by cannibalizing existing programs for people with developmental disabilities and mental illness to fund  services to other under-funded populations.

Other objections to the plan include:

The use of state-wide standardized assessments to determine needs and identify services is contrary to the idea of Person-Centered Planning. Assessments should be used by the PCP team to determine needs and services, but assessments alone should not be the determining factor. The state plan for dual eligibles reduces the PCP meeting to a little get-together to ratify the decisions that have already been made through the assessment process.

The proposed revisions to the Dual Eligible Plan's  "Care Bridge" give more control over assessment and determination of services to an Integrated Care Organization, ICO, a Medicaid health plan, thereby giving decision-making power to the medical system of care rather than the mental health system. While locally controlled Community Mental Health agencies may continue to play a role in assessing and determining needs of people with developmental disabilities, they do so under contract to the ICOs, organizations  that have little experience with the populations served by the CMH system. Case management services may or may not be provided by CMH agencies, further diminishing the role of publicly controlled local CMH agencies in implementing and overseeing the provision of services. 

Key Questions 

Overall, according to the Kaiser Commission Report, there are crucial questions that remain to be answered regarding how the 26 state's will implement their plans.
(Page 16) As CMS continues to review the 26 states’ proposals and finalizes MOUs [Memoranda of Understanding] to implement demonstrations in selected states over the coming months, attention should be given to several key questions, such as:

  • How will beneficiaries be notified about the demonstrations and enroll and disenroll?
  • How will Medicare and Medicaid contributions be calculated, risk-adjusted, and adjusted over time?
  • What will the source(s) of savings be, and how will savings be shared among CMS, the state, plans and/or providers?
  • How will the demonstrations affect access to home and community-based services?
  • How will medical necessity determinations be made, and how will beneficiaries appeal decisions with which they disagree?
  • Will beneficiaries be able to retain their current providers and services and access an adequate provider network?
  • How will plans and providers meet the needs of and provide reasonable accommodations to beneficiaries with a range of physical, mental health, and cognitive disabilities?
  • How will quality be measured, and how will the demonstrations be monitored and evaluated?
  • To what extent will the specific standards that health plans must meet to participate in the demonstrations vary from existing Medicare Advantage and Medicaid managed care requirements?
  • How will stakeholders continue to be engaged throughout the design and implementation process?
These are not trivial questions that must be answered. But of course, once a plan is approved it's not set in stone, is it? Well, apparently it is. This is from pages 18 and 19 of the Kaiser Commmission Report:

CMS’s financial alignment models for dual eligible beneficiaries are based on the Center for Medicare and Medicaid Innovation’s (CMMI) new § 1115A demonstration authority created in the ACA [the Affordable Care Act]. The following questions and answers explain the scope of the Secretary’s authority and the process for testing new payment and service delivery models under § 1115A. 

What is the scope of the Secretary’s [of Health and Human Services] § 1115A waiver authority?

The law [the Affordable Care Act] prohibits administrative or judicial review of the Secretary’s selection of models, organizations, sites, or participants; the elements, parameters, scope, and duration of models; determinations regarding budget neutrality, termination or modification of a design and implementation; and determinations about the expansion and scope of models.

Wow! A law that is outside the reach of administrative or judicial review? That's a chilling notion. This means the plan will have to be absolutely perfect before it is finally submitted to CMS by the state. What could possibly go wrong?

Wednesday, November 7, 2012

St. Louis Center "Fitness for Life" Program

St. Louis Center is a residential community for children and adults with developmental and intellectual disabilities located in Chelsea, Michigan, about 15 miles west of Ann Arbor.

St. Louis Center began offering a "Fitness for Life" program  this fall for qualified residents of Chelsea, Dexter, Grass Lake, Manchester, and Stockbridge, Michigan. The program is available to people with special needs. It's purpose is to increase the physical fitness level of participants, thereby increasing their capacity to perform normal daily activities more safely and independently.

According to an article in the Journal Register:

Caitlin Deis, a 2001 graduate of Chelsea High School with a bachelor's in psychology from Alma College, was hired to become the part-time fitness specialist in September 2011 and was offered the position full time in June 2012.

She had this to say about the program:

“What’s unique about our approach, is that if someone is afraid of using a free-weight to build arm strength, we might use a household object like a water bottle instead. Several of our participants don’t like standard exercises, but most like to dance, and we’ve even introduced them to yoga as a fun way to stretch and increase their flexibility and core strength. We’ve already experienced tremendous success with several of our residents, who have lost as much as 15-20 pounds. One young man here has even dropped 60 pounds through regular exercise and a change in his diet.”

For more information on the program schedule and fees, see the SLC Web site or contact Caitlin Deis, Fitness Specialist, by phone at 734-475-8430 or by email at  .

Monday, November 5, 2012

Election Eve - Make it stop!

Michigan HCBS Waiver Conference: November 28 & 29, 2012

Home and Community Based Services (HCBS) Medicaid waivers fund services to 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 (ICF/MR). These services are considered to be "medical assistance" and must be provided to eligible individuals in accordance with a written plan of care. Waivers available to adults with developmental disabilities are called Habilitation Support Waivers (HSW) in Michigan. They are also called 1915(c) waivers because they are described in Sec. 1915(c) of the Social Security Act.

The Michigan Department of Community Health & The Michigan Association of CMH Boards are sponsoring the "ANNUAL HOME AND COMMUNITY BASED WAIVER CONFERENCE", November 28 & 29, 2012 at the Kellogg Hotel & Conference Center, East Lansing, Michigan 48823

3 Featured Waivers:

  • Children’s Waiver Program (CWP)
  • Habilitation Supports Waiver (HSW)
  • Serious Emotional Disturbance Waiver (SEDW)
Conference Objective:  This conference will provide technical assistance and training on the implementation and maintenance of the 1915(c) waivers, clinical issues, and administrative functions relevant to these waivers.

Who Should Attend:  Case managers, supports coordinators, wraparound facilitators, clinicians, administrative staff, providers, people receiving services and family members.

Special Rate:  A special $20 conference rate will be offered for people receiving waiver services and their family members. A limited number of scholarships are available to people who receive services and their families. Scholarships may cover registration fees, overnight rooms, travel expenses, meals and child care.  Deadline to request scholarship: November 14, 2012. To request a scholarship form, contact Chris Ward at or 517-374-6848.

If you have any questions, call (517) 374-6848

Conference Registration Form

Conference Agenda

Friday, November 2, 2012

Study shows autistic students have similar outcomes whether or not in inclusive settings

An article from Disability Scoop, "Study: Inclusion May Not Be Best After All" by Michelle Diament, 11/1/11, summarizes an article from the journal Pediatrics . The study involved almost 500 autistic students and compared those who had spent 75 to 100% of the time in regular classrooms with those who were in more segregated settings. Those in inclusive settings were no more likely to complete high school, go to college or see improvements in cognitive functioning.

“We find no systematic indication that the level of inclusivity improves key future outcomes,” researchers from the University of Alabama at Birmingham and Johns Hopkins University wrote.

The Disability Scoop article goes on to misleadingly state that the Individuals with Disabilities Education Act requires that special education students be served in the "least restrictive environment"(LRE) meaning in regular classrooms. This is what most advocates for inclusion will tell you, but it's not true and it never has been true. The LRE is part of the placement decision and is based on the needs of the individual student.

Beyond the outcomes that were investigated in this study, there are all kinds of reasons to place children in inclusive settings or to opt for more segregated settings. The problem is that Inclusion fanatics have for years asserted that placing all children in regular classrooms with their non-disabled peers is better in all respects for everyone involved. But then Inclusion fanatics have always existed in a fantasy land undisturbed by reason or evidence.

Be sure to read the excellent comments on the Disability Scoop article.

Tuesday, October 30, 2012

Michigan Self-Determination Guidelines Revised

Self-Determination is a method of delivering services to people with developmental disabilities that allows individuals to have more control over the services they receive, the people who provide the services, and the expenditure of public funds to pay for the services. This is an option that must be made available by Community Mental Health agencies for anyone who desires it, including people with the most severe disabilities who have guardians who speak on their behalf. People who want and need a more traditional program of services may choose not to use Self-Determination.

Last March, 2012, the Michigan Department of Community Health  (MDCH) issued proposed revisions to the Self-Determination Policy and Practice Guidelines. The proposal appeared to be designed as a blunt instrument to bash guardians and to remove them from the planning process for self-determination as much as possible. The vast majority of guardians for people with developmental disabilities are parents, other family members, or close friends of the person with a developmental disability.

Ignoring the jurisdiction of the Probate Court to appoint or remove guardians and to establish the legal disabilities of the person with a developmental disability that lead to the need for guardianship, the MDCH encouraged Community Mental Health agencies to police guardians and circumvent their authority to make decisions on behalf of their wards. The MDCH said that CMH must  "…support  individuals who have guardians … to identify an independent advocate," (emphasis added), presumably to protect individuals from their court-appointed guardians. To add insult to injury, the guidelines would have allowed CMH to terminate self-determination arrangements when an agency determined that the guardians "restrict the individual's rights."

Thanks to the efforts of ddAdvocates of Michigan and families and other individuals who commented on the proposed Guidelines, most of the guardian-bashing wording was removed. The new guidelines are a great improvement over the initial proposal.

I still believe, however, that the claim by people who promote Self-Determination, that it gives people with disabilities more freedom to choose the services they want and more authority over available resources compared to other arrangements through CMH, is exaggerated. All agreements as to how Self-Determination arrangements will be handled, how much money will be available to pay for services, and how the finances will be managed is subject to the guidance, approval, and continual oversight of the CMH agency. This is to be expected with an agency that has the responsibility for overseeing the expenditure of public funds, primarily Medicaid funds.

It is important to keep other options available when Self-Determination is impractical or is not suitable to the needs of the individual. Self-Determination can place extra burdens on disabled individuals and families to administer the provision of services and funds normally handled by CMH, while the public agency still has control and must approve the expenditure of the funds provided. At best, these arrangements can open up new possibilities for providing and paying for desired services that are beneficial to many recipients of CMH services.

Election 2012: More on Michigan's Prop 4

The Detroit Free Press held an on-line Web Chat on Proposal 4, Michigan's ballot initiative  on collective bargaining rights for Home Help workers and continuation of an entity called the Michigan Quality Home Care Council to replace the Michigan Quality Community Care Council (MQC3) as the employer of Home Help workers for the purposes of collective bargaining with the union, SEIU Healthcare of Michigan. See an analysis of Prop 4 here and here .

The moderator for the chat was Jewel Gopwani from the Detroit Free Press. She was joined by Dohn Hoyle, Executive Director of the ARC Michigan, and Derk Wilcox from the Mackinac Center. They debated the issues involved in Prop 4 and answered questions from the public. The full transcript for the Chat is here . There were some details left out of the discussion and some statements that need further clarification.

Home Help workers are employed by seniors and people with disabilities and are paid with Medicaid funds to help their "employers" stay in their own homes. They provide help with personal care and household chores. Providers are often family members and friends of the senior or person with a disability and this was mentioned several times. The fact that they make up 75% of home help providers was left out. 80% of providers have only one client.

Parents, other family members, and friends usually view their participation in the Medicaid-funded Home Help Program as a way of subsidizing  the care their loved-ones need at home, rather than as as a career choice or a way to make a living. They are often surprised that they are part of a unionized workforce. It is understandable that people who are trying to make a living taking care of people in their own homes may welcome unionization depending on the benefits they can get through collective bargaining. When Home Help workers voted on whether to have the SEIU represent them in 2005, fewer than 20% participated in the election. Much of the opposition to Prop 4 comes from family members who object to paying union dues (or fees if they opt out of the union) for what they see as little benefit to themselves or their disabled family member.

Dohn Hoyle from the ARC Michigan sees the unionization issue as a distraction from the real purpose of Prop 4, which he says is to write into the constitution The Michigan Quality Home Care Council to replace the MQC3 and maintain a registry of workers who have passed background checks and have access to training. Although both Hoyle and Wilcox agreed that the registry, background checks, and training are important, the MQC3 registry only lists 900 plus providers and could continue without inclusion in the Michigan Constitution. Background checks are required only for providers who want to place their names on the registry and are only a first step in assuring safety and quality care.

Looking at the events that led up to the unionization of Home Help workers, it seems obvious that designation by the state of the MQC3 as a co-employer of Home Help providers and the representative of seniors and people with disabilities in collective bargaining was crucial to forming a public employees union. Without the MQC3, there would not have been an "employer" for the union to bargain with. All in all, it is a peculiar arrangement. Home Help workers at least had the opportunity to vote for representation from the union while seniors and people with disabilities did not have a say in their representation by the MQC3.

Athough Dohn Hoyle asserted several times that without state funding the registry is not being maintained, he finally conceded that it is being maintained, just not with sufficient state funding to the MQC3. The union, SEIU Healthcare, contributed $12,000 to the MQC3 before the MQC3 signed the last extension of the union contract, according to Mr. Wilcox. This appears to be a conflict of interest between the union and the MQC3 who are supposed to bargain with each other, the SEIU on behalf of workers and the MQC3 on behalf of employers.

One argument for Prop 4 is that it will allow people to live at home rather than have to go to expensive nursing homes. The Home Help Program has been available for more than 25 years and will continue whether or not Prop 4 passes. Home Help services in no way replicate the level of care that is available in nursing homes. There are other Medicaid funded services through Medicaid waivers that provide for much more care than the Home Help Program. Home Help services are invaluable for many seniors and people with disabilities, but they are only part of an array of services needed by people with significant disabilities.

I had a question about how a family member or other Home Help provider who does not want to belong to the union, can opt out. This is what I heard from another parent in Southeast Michigan who looked into this:

For questions about union representation and opting out, contact SEIU Healthcare at 1-866-734-8466 and ask for Steven Cousins. He was very helpful to this parent and explained what the dues are for and can answer other questions that you may have.

Then, send a letter to:

Secretary Treasurer
c/o Sandra Mcmillan
2604  4th Street
Detroit,  MI   48201

"I was told by SEIU Healthcare Michigan that I have the choice to opt out of the union as a Home Help Provider.  I would like to opt out, and not have any future dues deducted from my paychecks.  I understand that I will still have to pay a small monthly agency fee to remain under the Union contract, but will not have to pay union dues anymore."

In addition, provide all your contact information - name, address, phone number, and especially your Provider Number. Sign and date the letter.

Saturday, October 20, 2012

Election 2012: Michigan's Proposal 4 and Home Help Services

Proposal 4 is a controversial ballot proposal that takes a non-controversial Medicaid-funded service for people who need help to remain in their own homes and places it at the center of a debate over left-right politics, public employee unions, the role of advocates for seniors and people with disabilities, and a formerly state-funded organization - the MQC3 - that may or may not disappear unless Proposal 4 passes.

Whether or not Proposal 4 passes, Home Help Services will continue to be provided for people on Medicaid. The Home Help Services program has been around for over 25 years. If you are on Medicaid, you are entitled to these services based on your need for them.

The following is the wording for Prop 4: 


This proposal would:

  • Allow in-home care workers to bargain collectively with the Michigan Quality Home Care Council (MQHCC). Continue the current exclusive representative of in-home care workers until modified in accordance with labor laws.
  • Require MQHCC to provide training for in-home care workers, create a registry of workers who pass background checks, and provide financial services to patients to manage the cost of in-home care.
  • Preserve patients’ rights to hire in-home care workers who are not referred from the MQHCC registry who are bargaining unit members.
  • Authorize the MQHCC to set minimum compensation standards and terms and conditions of employment.
Background Information and Analysis of Prop 4

To understand proposal 4, the best place to go for an objective analysis of the issues is to a report from the Michigan Senate Fiscal Agency (SFA) that provides background information on the proposal and explains the ramifications of a "yes" or "no" vote.

The Introduction to the SFA report lays out the issues involved in this proposal:

"Proposal 12-4 relates to workers who provide in-home care to Medicaid-eligible recipients of services under an existing State program called Home Help Services. These workers, who are hired by the recipients and paid by the State, are often relatives or friends of the recipients. The workers belong to a labor union, SEIU [Service Employees International Union] Healthcare Michigan. For this purpose, the workers are considered public employees of an entity called the Michigan Quality Community Care Council.

"In April 2012, legislation was enacted to prevent these workers from being considered public employees, and to prevent SEIU Healthcare Michigan from being recognized as their bargaining representative. A Federal lawsuit was filed to challenge that law. In June, the judge issued a preliminary injunction, preventing the law from taking effect for the time being. The Attorney General has filed a motion to appeal."

The Home Help Services Program is administered by the Michigan Department of Human Services and is paid for with state and federal Medicaid funds. The program supports services to seniors and people with disabilities on Medicaid who need assistance with personal care activities and household chores. For more information, see The DD News Blog According to the SFA report, Proposal 4 reflects current practice with regard to recipients being allowed to hire and direct individual providers paid for by the state. Proposal 4 would not change this program.

The Michigan Quality Home Care Council (MQHCC) would replace the Michigan Quality Community Care Council (MQC3) and do what the MQC3 was doing, at least while it had funding: provide training for in-home care workers, create a registry of workers who pass background checks, and provide financial services to patients to manage the cost of in-home care. The MQC3 Board is made up of advocates for seniors and people with disabilities including Dohn Hoyle, the Executive Director of the ARC Michigan, who was the first Chair of the Board of Directors for MQC3. Here is a link to the MQC3 Web site.

According to the SFA, the MQHC "would set compensation standards, subject to appropriations by the legislature, and other terms of employment for the providers by program participants." Participant-employed providers would have the right to collectively bargain as public employees who do not belong to the civil service. "The providers would not be considered public or State employees for any other purpose, and would not have the right to strike," according to the SFA report.

Other pertinent facts are: 

  • The MQC3 was created in 2004 to coordinate personal assistance services provided by Home Help Services and to create a registry of providers. 
  • An election to organize Home Help Workers was held in 2005 with ballots sent out to 43,000 providers. Only about 8500 of them voted, with "yes" votes winning about 7 to 1 over "no" votes. 
  • According to a report from the Anderson Economic Group on "The Role of MQC3 and Home Help" from 2011, about 75% of the total number of home help workers are family members or friends of seniors or people with disabilities and 80% have only one client. 
  • In 2010 there were 53,516 consumers of home help services;  In 2008, there were on average 44,000 home help providers each month. 
  • MQC3 had an annual budget of about $1.1 million from the Michigan Department of Community Health. Its registry contains the names of about 900 providers.
Objections to the organizing of home help workers have come from many of those who are family members or friends of the person they are caring for in their own homes who do not consider themselves State employees. Others object to paying 2.75% of their meager wages (about $8 per hour) in union dues. They may opt out of belonging to the union but they still pay a fee to the union for representation.  As I understand it, the Michigan Department of Community Health deducts union dues and fees from Home Help workers pay checks, which are then sent through the MQC3 to SEIU Healthcare Michigan.

Others believe that the legislature, by passing Public Act 76 in April 2012 that amends Michigan's Public Employment Relations Act,
has undermined collective bargaining rights and that a constitutional amendment is necessary to protect these rights.  The law excludes people who receive government subsidies for their work from the definition of "public employee" and prohibits recognition of bargaining units made up of non-public employees. A Federal lawsuit challenged the law and an injunction has prevented it from going into effect.

The MQC3 has been defunded by the legislature and passing proposal 4 will put it back on its feet as the MQHCC. The organization's training programs and the registry of providers seem to be helpful, but whether it needs to be part of the Michigan Constitution is up to the voters.

One question that I have that I have not seen anyone address has to do with the MQC3 (and potentially the MQHCC) representing the "employers" of home help workers, seniors and people with disabilities who generate the Medicaid funding to pay for services.  Were these "employers" ever asked if they approved of the MQC3 representing them or if they wanted such representation? It appears that the State assigned the MQC3 to represent seniors and people with disabilities without their knowledge or participation.  

For Pro and Con views on Proposition 4, see opinion pieces in the Detroit Free Press from October 19, 2012:

Prop 4: Proposal assures higher standards for home caregivers, greater safety for patients by Dohn Hoyle


Prop 4: Family and loved ones providing home health care shouldn't be forced to pay union dues by Robert and Patricia Haynes

There will be a live chat on Proposal 4 at noon on Tuesday, October 23, 2012, sponsored by the Detroit Free Press. Go to the Web site  to submit questions in advance.

I will be the first to admit that I am not an expert on many of these issues. I am just doing the best I can to piece together the information available to me. If you have  questions, corrections, or comments on this blog post, please say so in the comments on my blog. I will publish them as long as they are civil and coherent. A diversity of views and opinions on this issue are welcome.

Friday, October 12, 2012

Parents Night Out Video

Washtenaw County, MI: Parents Night Out!

From the Web site of the St. Luke's special needs ministry of Ann Arbor, MI:

Parents Night Out is a respite program for parents who have children with special needs.  This program is offered from 6-9 p.m. on the first Friday of every month from October-June at St. Luke Lutheran Church-Ann Arbor, MI.  Parents can enjoy a break while leaving their children in the care of responsible volunteers. This program is FREE and open to anyone who has a need. Children enjoy activities such as open gym play, crafts, music, and a movie.  Snack time is also provided.  We have no restrictions on age of children or ability level.  Siblings are also welcomed and encouraged to come.  Registration and an R.S.V.P. is required for each evening.  Space is limited to the first 25 children signed up.  

For more information, see the Web site. Watch the beautiful video from the Parents Night Out Program. So many familiar faces.

A Different Path newsletter for parents of special needs children

Washtenaw County, Michigan, is the home of A Different Path newsletter, a non-profit quarterly publication that relies solely on individual donations to cover mailing and printing costs. I have posted the Fall 2012 newsletter here.

As always, A Different Path is written and produced by local parents and is both heartfelt and informative. This issue has an especially good article written by two parents on approaches to using assistive technology with two different children with cerebral palsy. Access to assistive technology is best viewed as an "engineering challenge" that allows children with CP to overcome physical barriers to give them more control over their environment. There is advice on who to talk to and costs for setting up assistive technology systems that work for the child.

Throw a few bucks their way by sending a check to: 

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

Wednesday, October 3, 2012

Penny Wise and Pound Foolish: States cut Medicaid dental coverage for poor and disabled adults

An article in The Huffington Post by Daniel Lippman - "States Drastically Cut Dental Care For Adults on Medicaid" (10/02/12) - describes how states are cutting Medicaid dental services to restrain Medicaid spending.

According to the article, states that have recently cut Medicaid coverage of dental care for adults include: Pennsylvania, Massachusetts, Illinois, California and Washington. States are limiting or eliminating dental care for adults because they can. Dental care for adults is an "optional" service under Medicaid and is therefore an easy target for cost-cutting when budgets are tight.
  • Washington State has preserved coverage for developmentally disabled adults and people in long-term care, while eliminating care for other poor and disabled adults. 
  • Massachusetts will cover fillings, dentures, and root canals for front teeth hoping to make it easier for people on Medicaid to get and retain jobs, but back teeth (out-of-sight, out-of-mind?) are not covered.
  • Illinois used to cover front teeth, but no longer. They will still cover emergency procedures such as extractions. 
  • According to an NPR report on the lack of Medicaid coverage for adults in California, "In interviews with dozens of dentists and safety-net clinics around California, providers say patients are forgoing routine cleanings and delaying care until the pain is unbearable." 
  • Pennsylvania has reduced Medicaid dental care for adults to basic services - cleanings, fillings and extractions.
Michigan is not mentioned in the Huffington Post article. Although the state continues to cover dental services for adults, the number of dentists who will see people on Medicaid has been drastically reduced by low reimbursement rates. This makes the program a virtually rationed system available to those who are lucky enough to find appropriate care or can find other ways to pay for it. Whether this saves money for the state is doubtful. There is increased reliance on emergency room visits to obtain painkillers and antibiotics to treat dental problems and more hospitalizations resulting from poor care.

Here is more coverage of dental issues in The DD News Blog.

This is the Medicaid Data Base describing Michigan's Medicaid coverage of dental care.

Tuesday, September 25, 2012

Draft revisions to Michigan's Dual Eligibles plan

Is it possible to make the Michigan plan for Dual Eligibles worse for people with developmental disabilities? Apparently, yes, but we all still have a say in how this comes out and so does the Michigan legislature.

This is an e-mail from Tom Bird from ddAdvocates of Western Michigan sent out on 9/5/12.  It provides links to documents and other sources of information on Michigan's new proposal for an Integrated Care Bridge between Medicare, Medicaid, and mental health services.

From the Michigan Department of Community Health (MDCH): 

The Michigan Department of Community Health submitted documents to the Centers for Medicare and Medicaid Services (CMS) in response to its request for additional detail regarding the Integrated Care Bridge.  The Care Bridge is Michigan’s model for care coordination that was first outlined in the integrated care proposal submitted to CMS in April 2012.

These documents are drafts of the proposed Care Bridge concepts, have been posted to the website, and will be updated as discussions with CMS and stakeholders continue.


See the current Care Bridge concepts here. Scroll down to "Care Bridge Documents - 8-30-2012" for the link to the documents. The direct link to the pdf file is here .

Tom Bird's comments on the proposal:

"This contains the letters to CMS as well as the power point presentation, and a 'narrative' on how the care bridge would work, in addition to the vignettes on how it is supposed to work. The PLC [Primary Lead Coordinator] is supposed to be an ICO [Integrated Care Organization] (multi-county Health Plan) employee, responsible for the initial screening and intake, and the LC [Lead Coordinator] is either an ICO employee or an ICO-certified and trained contractor of another organization which the ICO will ultimately have control over and oversight of. It could be an existing CMH supports coordinator, but they would have to be trained and supervised by the ICO, with their time billed to the ICO. Either way, it puts the ICO (Health Plan) in total control of the 'care Bridge' functions as well as all of the funding for both Medicare and Medicaid (which are co-mingled and can be redistributed as the ICO desires); it puts the ICO in a position to deny or restrict services desired by the consumer, all far removed from the current system of local delivery, which presently offers local input and oversight via control of CMH Board appointments. If you add the incentive for the ICO to restrict (expensive) services due to the proposed 'profit sharing' of any savings, you have a big red flag waving."

Legislative review of changes to the Dual Eligibles plan is required by law: 

The following is wording from the 2012 appropriations law concerning legislative review of plans submitted to the federal Centers for Medicare and Medicaid Services (CMS):

Sec. 264. 
(1) Upon submission of a Medicaid waiver, a Medicaid state plan amendment, or a similar proposal to the centers for Medicare and Medicaid services, the department shall notify the house and senate appropriations subcommittees on community health and the house and senate fiscal agencies of the submission.

(2) The department shall provide written or verbal biannual reports to the senate and house appropriations subcommittees on community health and the senate and house fiscal agencies summarizing the status of any new or ongoing discussions with the centers for Medicare and Medicaid services or the federal department of health and humanservices regarding potential or future Medicaid waiver applications.

(3) The department shall inform the senate and house appropriations subcommittees on community health and the senate and house fiscal agencies of any alterations or adjustments made to the published plan for integrated care for individuals who are dual Medicare/Medicaid eligibles when the final version of the plan has been submitted to the
federal centers for Medicare and Medicaid services or the federal department of health and human services.

(4) At least 30 days before implementation of the plan for integrated care for individuals who are dual Medicare/Medicaid eligibles, the department shall submit the plan to the legislature for review.
[emphasis added]


Here is a refresher course on the issues regarding dual eligibles and people with DD.

Monday, September 17, 2012

Vulnerable seniors at risk from paid home caregivers

The VOR Weekly News Update from 9/14/12 reports on a national study: Dangerous Caregivers - Agencies place unqualified, possibly criminal caregivers in homes of vulnerable seniors

According to the Northwestern University News Center, July 10, 2012, "A troubling new national study finds many agencies recruit random strangers off Craigslist and place them in the homes of vulnerable elderly people with dementia, don’t do national criminal background checks or drug testing, lie about testing the qualifications of caregivers and don’t require any experience or provide real training."

The study was published in the July 13 issue of the Journal of American Geriatrics Society.

VOR notes that VOR will encourage the study’s authors to consider a similar study of caregivers for people with intellectual and developmental disabilities.

Here is more from the Northwestern University News Center article by Maria Paul:

The author of the study Lee Lindquist, M.D., an associate professor of medicine at Northwestern University Feinberg School of Medicine and a physician at Northwestern Memorial Hospital is quoted in the article:

“It’s a cauldron of potentially serious problems that could really hurt the senior,” Lindquist said. “These agencies are a largely unregulated industry that is growing rapidly with high need as our population ages. This is big business with potentially large profit margins and lots of people are jumping into it.”

Some of the findings from the study:
  • Only 55 percent of the agencies did a federal background check.
  • Only one-third of agencies interviewed said they did drug testing - "'Considering that seniors often take pain medications, including narcotics, this is risky,' Lindquist said. 'Some of the paid caregivers may be illicit drug users and could easily use or steal the seniors’ drugs to support their own habits.'"
  • Few agencies (only one-third) test for caregiver skill competency - "A common method of assessing skill competencies was 'client feedback,' which was explained as expecting the senior or family member to alert the agency that their caregiver was doing a skill incorrectly."
  • Inconsistent supervision of the caregiver.
“'The public should demand higher standards, but in the short term, seniors need to be aware what explicitly to look for when hiring a paid caregiver through an agency,' Lindquist said."

Dr. Lindquist's advice on hiring caregivers:

  1. How do you recruit caregivers, and what are your hiring requirements?
  2. What types of screenings are performed on caregivers before you hire them? Criminal background check—federal or state? Drug screening? Other?
  3. Are they certified in CPR or do they have any health-related training?
  4. Are the caregivers insured and bonded through your agency?
  5. What competencies are expected of the caregiver you send to the home? (These could include lifting and transfers, homemaking skills, personal care skills such as bathing, dressing, toileting, training in behavioral management and cognitive support.)
  6. How do you assess what the caregiver is capable of doing?
  7. What is your policy on providing a substitute caregiver if a regular caregiver cannot provide the contracted services?
  8. If there is dissatisfaction with a particular caregiver, will a substitute be provided?
  9. Does the agency provide a supervisor to evaluate the quality of home care on a regular basis? How frequently?
  10. Does supervision occur over the telephone, through progress reports or in-person at the home of the older adult?

Friday, September 7, 2012

Rights Workshop in Howell, Michigan: 10/4/12

A Web site for the Family-to-Family Health Information & Education Center, or F2FHIEC, has loads of information for families with special needs children. According to the Web site, "Our goal is to improve access to quality care and supports for children with special needs in their communities by empowering families." F2FHIEC is funded by the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau under the Patient Protection and Affordable Care Act (ACA) of 2010. 

A workshop sponsored by Family-to-Family called "What Are My Rights and Responsibilities and Who Can Help Me Navigate the System?
 " should be helpful to families of adults with disabilities as well as families with special needs children.

This is from the Web site about the workshop in Howell that will be held on October 4, 2012, from 9 a.m. to 3 p.m. at the Livingston ESA, 1425 West Grand River Avenue, Howell, MI :

[The workshop] is for anyone who wants a better understanding of rights, responsibilities and complaint processes including timelines, complaint procedures and what someone could expect during the processes under:

  • Children’s Special Health Care Services
  • Community Mental Health Services/Hospital Mental Health
  • Medicaid
  • Special Education Services
Participants will receive resource information for groups and organizations available to assist in navigating systems and protecting a client’s rights. Basic information will be provided on how to gain access to and what makes someone eligible under each system.

Workshop Fee: $10 (Includes Meal)

SBCEUs or SWCEs: $15 [This is for people who need the workshop to count toward certification or accreditation.]

Scholarships: A limited number of scholarships are available for families. Please contact Lisa Cook-Gordon at (800) 359-3722.

Click here to register for the workshop in Howell.

Other Training Dates/Times/Locations outside of Southeastern Michigan:
  • October 9, 2012 from 9:00 am – 3:00 pm at Eastern Upper Peninsula ISD, 315 Armory Place, Sault Ste. Marie, MI 49783
  • October 11, 2012 from 9:00 am – 3:00 pm at Menominee ISD, 1201 41st Avenue, Menominee, MI 49858
  • October 29, 2012 from 9:00 am – 3:00 pm at Otsego District Public Library, 219 South Farmer Street, Otsego, MI 49078
  • November 12, 2012 from 9:00 am – 3:00 pm at Macomb ISD, Room 104, 44001 Garfield Road, Clinton Township, MI 48038 (586) 228-3321

Tuesday, August 28, 2012

Autism linked to Immune Disorders

In an opinion piece in The New York Times, 8/25/12, called "An Immune Disorder at the Root of Autism", the author Moises Beasquez-Manoff  discusses research that shows that perhaps one-third of cases of autism are caused by immune dysregulation related to the mother's response to inflammation during pregnancy. Results of a study in Denmark, for instance, indicate that viral infections in the mother during pregnancy increases the chances of having an autistic child by 30% and bacterial infections by 40%.

Infection is unlikely to have caused the increased incidence in cases of autism directly, because we are "more infection free than any other time in history". Instead, the increase parallels other epidemics like asthma and other autoimmune diseases. Autism seems linked to the autoimmune diseases of the mother:

"…One large Danish study, which included nearly 700,000 births over a decade, found that a mother’s rheumatoid arthritis, a degenerative disease of the joints, elevated a child’s risk of autism by 80 percent. Her celiac disease, an inflammatory disease prompted by proteins in wheat and other grains, increased it 350 percent. Genetic studies tell a similar tale. Gene variants associated with autoimmune disease — genes of the immune system — also increase the risk of autism, especially when they occur in the mother."

Theories to explain the increase in autoimmune diseases include the hygiene hypothesis — that we suffer from "microbial deprivation" and that in cultures with more exposure to microbes and parasites there are fewer autoimmune diseases. Animal studies also support some of the theories proposed in this article.

These studies provide a "therapeutic target" for treatment of autism and further research.

Monday, August 27, 2012

The House of Gort: a glimpse into the life of a Michigan family caring for two severely disabled daughters

The House of Gort from Steve Tatzmann on Vimeo.

"The House of Gort" is an exceptionally well-done documentary giving a glimpse into the life of the Gort family. Gwen, the first daughter of Tim and Gina Gort, was born with cerebral palsy. The second, the adorable Violet, has no disabilities. The third daughter, Eliza, was born healthy but suffered a cardiac arrest due to a medical error in the hospital. She has severe cerebral palsy as a result of the brain damage she suffered. [Gwen and Eliza are no less adorable than Violet, but they get starring roles in the video. Violet will have to settle for "best supporting actress" with extra accolades for being adorable.]

The video documents the constant care that the Gorts give their daughters and the consequences of medical errors. Their story was covered in the Grand Rapids News on 8/12/12 in an article by Sue Thoms - Parents sue DeVos Children's Hospital over newborn daughter's brain damage: 'They know they are wrong'.  It was also covered in a Grand Rapids TV news story on 8/12/12.

The Gort's have a blog where you can follow their story.

Wednesday, August 22, 2012

Abuse and sexual assault of people with DD

This is from the the VOR Weekly News Update for August 17, 2012.  It is about the rape of a developmentally disabled man who lived in a group home in New Mexico.  These are excerpts from an article in the Albuquerque Journal that appeared on February 23, 2010.

Larry Selk, who cannot speak or perform daily functions on his own, was raped in 2004 while living in College House, a group home operated by a ResCare's subsidiary in Roswell, New Mexico. The likely perpetrator was a group home employee who had been hastily hired after much of the College House staff was fired for using drugs and there was an urgent need for replacement staff. The man was hired with virtually no background check, which could have discovered problems in his past, and put on the job essentially untrained, according to trial evidence.  

A lawsuit was brought on Selk's behalf by his sister and legal guardian, Rani Rubio, resulted in a jury award of $48 million in punitive damages. Res-Care appealed, resulting in the judge slicing away a significant chunk of a jury's historically high punitive damages award. The punitive damages award was reduced from $48 million to $9.6 million in an order that also denied the company, ResCare Inc., a new trial.  

Second Judicial District Judge Nan Nash found that the punitive damage award was "unreasonable." "While (ResCare's) conduct was reckless, it was not intentional or malicious," Nash wrote in an order filed Friday. Nash left intact the compensatory damages — nearly $1.5 million against ResCare New Mexico and $3.2 million against ResCare Inc.

The ARC of New Mexico filed an Amicus brief in support of punitive awards for abusive providers. (An Amicus brief is a statement submitted by an individual or organization who is not a party to a lawsuit but has been permitted by the court to weigh-in on legal matters related to the case.) Unfortunately, the punitive damages awarded to the disabled man in this case were reduced, but the brief is nevertheless a valuable resource for anyone looking for information on this topic. It is a compendium of sources on abuse, especially sexual assault, on people with disabilities, showing how vulnerable adults are targeted by sexual predators, how crimes against them are under reported and often never reported to law enforcement, and how short staffing and frequent staff turnover in group homes increases the risk of abuse.

These are excerpts from the Amicus Brief:

  • p 2: The lives of those with developmental disabilities cannot be improved... unless their lives are first made safe. Unfortunately, the deck is stacked against those with disabilities. Sexual predators see people with disabilities as powerless and vulnerable. Consequently, people with disabilities suffer abuse and rape at much higher rates than the general population.
  • p 2: For large-scale providers such as RCI, only substantial punitive damages awards can force them to improve the quality of care they provide to Mr. Selk and others-and thus deter similar injuries in the future.
  • p 11: Researchers recognize that high turnover among the staff increases the risk of sexual assault...When service providers fail to provide adequate staff and supervision, it also increases the risk of sexual violence.
  • p 12: If a provider is on notice of but fails to correct systemic problems, this demonstrates a fundamental lack of respect for the rights of its residents.
  • p14: While the estimates of sexual abuse of developmentally disabled people are staggering, it may only be the tip of the iceberg. As one New Mexico survey found, "[r]ape is significantly under-reported to law enforcement…"
  • p 15: … the problem is probably bigger than suspected, the victims even more numerous. And yet, in part because the crimes are not reported, offenders go unpunished, free to commit more crimes-while service providers entrusted with the individuals' care and safety know little risk exists of being held accountable even though their own failures provided opportunity for the crime.
  • p 15: Even when victims or their loved ones report sexual assault, the perpetrator usually is not punished.
  • p 15 - 16: When society's response to sexual assault is devoid of serious penalties, it increases the perception that people with developmental disabilities are unequal in the eyes of the law.
  • p 16: Civil lawsuits against service providers who injure their residents, rather than care for them, play a crucial role in ensuring equal rights and the safety of individuals with disabilities. If we can encourage these providers to fulfill their duty to their residents--or at least deter them from breaching that duty-sexual violence against vulnerable individuals will be reduced.