Monday, September 30, 2013

The ARC Michigan to the State : Stop funding congregate settings

...sentenced to a bucolic lifestyle
The ARC Michigan is at it again, demanding that the state discontinue Medicaid funding for people with developmental disabilities participating in programs that don't meet the ARC's approval. This time around, The ARC MI, a state advocacy organization for people with DD, is backed up by five other advocacy groups whose executive directors co-signed a letter to James Haveman, the director of the  Michigan Department of Community Health (MDCH). Despite the backing of the Autism Society of Michigan, the Epilepsy Foundation of Michigan, the Michigan Disability Rights Coalition, United Cerebral Palsy of Michigan, and Michigan Protection and Advocacy Service, the ARC is still not persuasive in arguing that people with DD  are being discriminated against when they choose to participate in specialized programs designed for people with disabilities.

The complaint by these advocates appears to be based on the misconception that any congregate setting (a setting that serves more than two or three people with disabilities in a group to provide specialized services or residential options) is by definition discriminatory. They claim that this comes from the Americans with Disabilities Act (ADA) and the 1999 U.S. Supreme Court Olmstead decision, but this is easily disproved. This misreading or misinterpretation of the law makes one wonder if the executive directors of these influential organizations have ever read the ADA or Olmstead. Their misconception, however, is  prevalent among many government-funded advocacy groups and is even being used by state and federal governments as an excuse to eliminate specialized services and programs for people with DD. Who knows whether the advocates have deliberately misinterpreted the law, or whether they have come to believe their own misconceptions after hearing them repeated over and over again.

The project that is receiving the most attention from these groups at the moment is Benjamin's Hope, a non-profit in Holland, Michigan. This is a newly opened parent-initiated project that will eventually house 24 people with autism and other developmental disabilities in custom-designed homes. A 40-acre campus will provide recreation, meaningful employment, and other programs for both residents and the larger Holland and Ottawa County communities. It is a public/private model, that uses public funds for direct care. Medicaid "Home and Community Based Services" funds pay for direct services for participants but specifically do not pay for housing, food, or other basic supports. (HCBS funding is generally available for eligible DD adults regardless of where they live.)

The advocates shrilly contend that the existence of projects such as Benjamin's Hope reverses policies "in the direction of integration and inclusion…" They find them "unwarranted and frightening", calling the "demand" for public dollars "a form of blackmail...They are saying we will decide where and ho[w] people, including our children, with developmental disabilities will be served well past our life time. They will be isolated, segregated and served in institution-like situations, albeit a private one, using public dollars."

"…should Medicaid/CMS [the federal Centers for Medicare and Medicaid Services] end up permitting funding, generations of persons with developmental disabilities will be sentenced to occupy isolated settings separate from real community and the rest of us, even if at some artificial point community contact is attempted." [click here for more on the controversy over proposed CMS rules.]

Blackmail? Isolation and segregation? Institution-like situations? That's strong language for these organizations to use, especially considering that their letter offers no evidence to support any of these accusations. I know of no individuals living at Benjamin's Hope, for instance, who had to blackmail their local Community Mental Health agency to receive funding. It is safe to assume that people involved in the project were funded only after a careful process of individual evaluation, person-centered planning, and the weighing of possible alternatives. Their families most likely did a great deal of soul-searching before they made the momentous decision to place the care of their loved-ones in the hands of others.

Just how isolated and segregated are the people living at Benjamin's Hope? Within two weeks after the ARC Michigan letter was written and signed, Benjamin's Hope held its grand opening,"the Firelight Festival of Hope", that included not only the people directly involved in the project, but hundreds of people from the community enthusiastically showing their support.  In addition, State Senator Arlen Meekhof and state Representative Amanda Price presented a tribute honoring the non-profit, signed by Lt. Governor Brian Calley whose daughter has autism. The success of Benjamin's Hope is strongly  linked to the fact that it is engaged with and supported by its surrounding community.

Furthermore, as far as I am aware, no one involved in Benjamin's Hope or any other family-initiated and community-supported project ever suggested that they intend to impose their model of community living on any individuals who do not want it. This is in sharp contrast to the approach taken by the professional advocacy organizations.

Perhaps the ARC and the co-signers of the letter to the State would not have found projects such as Benjamin's Hope so "frightening" if they had ever bothered to talk to the people involved or to their families. None of the executive directors who signed the letter bothered even to contact the director of Benjamin's Hope.

Could there be a more obvious display of the arrogance of advocates who are so sure that they know what is best for everyone that they never have to contemplate the harm they may be doing to the people they claim to represent?


Links to documents:

Letter to CMS from Dohn Hoyle, the ARC MI Executive Director, 8/13/13
Letter to CMS from U.S. Representative Huizenga supporting Benjamin's Hope
Letter to MDCH from The ARC MI and other advocacy groups 9/3/13

The ADA, Olmstead, and Choice: 

The Americans with Disabilities Act (ADA) prohibits discrimination against people with disabilities. It requires state and local governments to “administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities”, but it does not define what an appropriate setting is for every person with a disability. Identifying needs and the appropriateness of settings can only be determined on an individual basis.

The Olmstead decision determined that unjustified institutionalization is discrimination. Transfer to a community placement from an institution is required only if the State’s treatment professionals have determined that community placement is appropriate, the individual affected does not oppose the transfer, and the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of other with mental disabilities.

Olmstead Resources
1999 U.S. Supreme Court Olmstead Decision
Olmstead Presentation by Bill Burke
What Olmstead is Not


Cheryl Felak said...

Thank you very much for this clear and informative article. I will be sharing with many.

Anonymous said...


The model of EVERY individual with DD living 'independently' is utterly impossible. It is isolating to those with moderate/severe DD and with 24/7 caregivers rotating into an apartment/home to provide care for that single individual, the social interactions and community involvement are LIMITED to say the least. The thought that each person with DD should live independently with care leaves little or no room for social or community interaction and involvement and is an irresponsible use of public funding. All people, regardless of their ability and disability should have interaction and involvement with others. Sharing the joys of family style living, community interaction and involvement is what a model like Benjamin’s Hope is about.

The word ‘congregate’ only applies in one way to Benjamin's Hope – and that is there are 4-5 adults with DD per house/home – these are HOMES like no other. "Tour" for yourself at These homes are so different than what you imagine – each person has their own condo style unit that provides private bed, bath, and living quarters as well as a large shared space for dining and household activities. It is one of a kind hybrid of independent/dependent living providing social interaction and community involvement at every turn. With great qualified care, stunning housing, property and opportunities for those with DD, it is the best model for adult’s with DD that I have seen.

Please do not lump Benjamin’s Hope in a ‘congregate setting model’ – it is misleading! Caring for and loving those with DD should look many different ways based on the needs and challenges of the DD. Not every person does well in identical living settings. Care options should be offered, Benjamin’s Hope model of care should be one. The homes & property will astound you. This is first class care in a first class setting that we should duplicate and model much more for the sake of those that can not speak for themselves and for all the families that so desire this type of care and setting for their adult child with DD. Every family should have the ability to choose what is best for their child and Benjamin's Hope offers a one of a kind choice that Michigan should be proud of.

Jill Barker said...

Perhaps you misunderstood the point I was trying to get across.

Yes, I did visit Benjamin's Hope and it is very impressive. The design of the group home I saw was really done well and so much of it is obviously responding to what families want for their adult children. Benjamin's Hope, however, is "congregate care" as it is being defined by advocacy groups and CMS. My point is that there is nothing wrong with congregate care if the care is good and it is appropriate to the needs of the individual.
I have also visited Harbor House Ministries in Jenison, Michigan, a place where I would readily have my sons live if it was not 150 miles from Ann Arbor. It would be an excellent place for them to get the care they need and the variety of stimulating activities that would keep them engaged and, most of all, happy.

I'm a little baffled that you thought I was criticizing the Benjamin's Hope Community, when I found it to have exactly the features that you praise.