Truth vs. myth

"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

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

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

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

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!

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

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

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

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

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