Solutions for Special Needs Housing

Below is an article from the Autism Housing Network that was originally written for the Special Needs Alliance in 2016. It is full of interesting links and information for families to come up with housing solutions for their disabled family members.

"I encourage families to explore options, and instead of trying to find the box to squeeze into, think of how supports can be based around the person. This will help determine the type of setting to call home and the people or places needed to maintain a happy lifestyle. This is called “person-centered planning” and, when at all possible, your loved one should be included in these discussions." ....Desiree Kameka

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Housing: A Big Piece of Puzzle for Ensuring Your Loved One’s Future

Article by: Desiree Kameka

Written on: Aug 27, 2018

This article was previously written for the Special Needs Alliance, posted here, and has been reposted on the Autism Housing Network.

As the project leader for the Autism Housing Network, I have visited over 100 residential options and social enterprises across our country. I have seen the great, the good, the bad, and the “I thought this was a good idea.” Abraham Maslow was right when he listed “shelter” as one of the foundational elements for his Hierarchy of Human Needs and Dimensions, along with air, water, food, sleep (another big one!) and clothing. A home determines physical and mental health, access to opportunities and quality of life for an individual. Housing is the anchor for a stable life.

When thinking about the future of your loved one with intellectual/developmental disabilities, you probably ask yourself if you should be focusing on finding the right service provider, building relationships, seeking employment, etc. We can invest enormous amounts of energy in pursuit of those important goals. But all that may be lost if rising rents force someone on an extremely low, fixed income, or their host family, to relocate. Or if the group home they live in must close. The greatest investment we make to ensure life stability is a home. Even when all other plans fail, loved ones still have their home.

To help families plan and understand their choices, Madison House Autism Foundation created a five-part video series called the AHN Virtual Tour of Housing and Support Options, which describes the benefits and considerations of 18 different housing and service delivery options, from traditional to emerging models. The video series will explain examples in depth, but there are four major categories to consider for legal and financial planning: 

Rely 100 percent on government support. 

Options include:

• An Intermediate Care Facility (ICF-ID), through which housing and support services are provided to eligible persons needing an institutional level of support; 
• Placing in a host family home, adult foster care or group home, with rent paid to the service provider using Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI), and support services paid for through a Medicaid waiver; 
• Securing an affordable housing voucher/unit, with a Medicaid waiver paying for support services in one’s home. 

The availability of these options is extremely limited and can fluctuate, depending on government policy and budgets. This is where members of the Special Needs Alliance can be of great help, since public assistance is often “means-tested,” and it is important to be vigilant to ensure that one remains eligible. The AHN Resource Directory has a filter for ‘Finding Public Assistance’ that can lead you to helpful links.

Invest privately in housing and access Medicaid for support services and/or arrange supportive housemates. 

This disconnects one’s service provider from their housing and provides the most control over one’s home. One could continue living in their family home, or could move into a tiny home/accessory dwelling on the same property, or another home purchased for them elsewhere. Some families combine resources in order to buy a home together. Others may purchase a home/unit in an intentionally neurodiverse cohousing or planned community. A Medicaid waiver would then be needed to pay for everyday assistance and support. Under these circumstances, one can change service providers as needed without being forced to relocate. This separation of housing and service provider is generally referred to as “consumer-controlled” housing. Renting to roommates can offer an additional income stream to help pay for living expenses, as well as offering unpaid support. 

100% private pay, tuition-based residential. 

This can be a single apartment in a big city or a campus-based setting, where one has home, work and recreational options. Tuition includes one’s housing, coordination of daily in-person support, meals, planned activities, transportation and other services. This is an option only if you can afford tuition that starts at $38,000 a year for the individual’s lifespan. It is important to think about whether or not the provider will be around for the duration of your loved one’s life or what would happen if their support needs change. You can find a list of these in the AHN Housing Directory by clicking “Private Pay” under the “Payment Options” filter.

Transitional or post-secondary programs. 

This is not a permanent solution. Instead, it’s a private pay program that intensely teaches life skills, with the goal of giving someone the training needed to live more independently in the future. It is an investment of at least $2,500 a month for the duration of the program. These can also be found in the AHN Housing Directory.

I encourage families to explore options, and instead of trying to find the box to squeeze into, think of how supports can be based around the person. This will help determine the type of setting to call home and the people or places needed to maintain a happy lifestyle. This is called “person-centered planning” and, when at all possible, your loved one should be included in these discussions.

I hope this has been a helpful introduction and has persuaded you to prioritize housing when planning for the future.

"Nothing About Us Without Us": An empty slogan for residents of facilities for intellectually disabled

Unfortunately, this is typical of how residents of Intermediate Care Facilities for people with intellectual disabilities (ICF/IID) and their families are treated in discussions about closing these facilities. This is from the VOR email news update of 8/10/18:



The Press and Us

A small online news service in Connecticut ran a series of articles this week, ostensibly about how the state's financial problems affect non-profits that offer a variety of services to people in the CT, and how they need more support from the public, religious groups, and the State. While the 10-article series covered a number of non-profits, the focus of the reporting was limited to one topic.

What this series really amounted to was this year's forum for the opponents of Southbury Training School [a state run ICF/IID]. Last year, they funneled $50,000 through the CT Council on Disabilities and the ARC of CT to pay for a program on Connecticut Public Television wherein they made their claims that everyone does better in the community and that closing all ICFs will magically provide services for people on the waiting list. All of this is opinion dressed up as news, and none of the people involved in this story have ever bothered to visit Southbury Training School or any of the three remaining Regional Centers.

We've heard this all before. We know different. We've seen tens of thousands of beds disappear from ICFs over the last three decades while waiting lists have grown at an even greater rate. We have seen the differences between what is offered at ICFs and at HCBS [Home and Community-Based Services] waiver settings. We know that one size does not fit all and that the needs of the higher functioning members of the IDD population have little in common with the needs of the most severely intellectually disabled.

We are not going to link to these stories this week. Our members have read this before, and we don't want this news outlet to get any more "hits" than they already have. Instead, what we are going to do is remind our readers of how important our contacts with the press are, how much power the press has, and the need to find reporters who are interested in all sides and nuances of the stories they write, and to work with those reporters. It's not a matter of fake news - it's about good, responsible reporting...

Regulating community services for people with disabilities: a promise fulfilled or a barrier to appropriate services?

In 2014, the federal Centers for Medicare and Medicaid Services issued “the Settings Rule” as an attempt to regulate how and where Medicaid-funded Home and Community-Based Services (HCBS) are provided in community settings to people with disabilities. Although the settings rule is promoted as a policy of liberation to bring about “true” integration and inclusion of people with disabilities in community settings, the corollary to that is the assertion that the rule will free up funding to be redistributed, first by closing programs that some advocates argue no one wants or needs, and then to pay for services that the same advocates claim are "truly" inclusive.

Many IDD advocacy groups, most notably those receiving federal funding under the federal Developmental Disabilities Act, oppose all “congregate” programs that serve more than 3 or 4 people with intellectual and developmental disabilities (IDD) together. Rather than emphasizing the individual right to appropriate services and the requirement that “a public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities…” [emphasis added], many advocates promoting the Settings Rule have focused mostly on closing programs, thereby eliminating them as a choice for those who still want and need them. 

To what extent is implementation of the Settings Rule improving the lives of people with IDD? Or is it just an excuse to reduce or eliminate programs for people with the highest support needs in hopes that others can benefit from the redistribution of precious Medicaid dollars?  Is it realistic to expect that the supposed cost-savings will pay for more and better services in the community? From the perspective of people with IDD and their families who are losing programs they have relied on for years, the Settings Rule is seen as an excuse to de-fund needed services. 

Judging from the promises made over many decades from advocates and government agencies, that closing institutions would pay for more and better services in the community, it is highly doubtful that removing people from institutions (or from settings that are too "institutional in nature” under the Settings Rule) will generate significant savings to pay for adequate services for everyone else. 

As advocates and government agencies pursue their dream of closing all institutions, as well as eliminating specialized group settings for people with disabilities, they avoid the obvious question of how much more money must be put into the system to meet the needs of people with IDD and where will it come from? It means confronting politically unpopular ideas, at least unpopular with most current elected officials, such as boosting Medicaid funding to pay for more and better services. Efforts to stabilize the workforce of direct service providers by providing them with a living wage and better working conditions and linking the funding of services with needs established by well-written individual service plans could improve both the quality of services and accountability to people with disabilities and to taxpayers.

This dilemma - justifying program closures with promises of future savings to pay for community services - was recognized by a fervent proponent of deinstitutionalization Sam Bagenstos, a former Principal Deputy Assistant Attorney General in the Obama Justice Department’s Civil Rights Division and a key litigator in deinstitutionalization cases. [This is the same Sam Bagenstos who is running for the Michigan Supreme Court in the November 2018 election.] In a 2010 Cardozo Law Review article, “The Past and Future of Deinstitutionalization Litigation”, Bagenstos admits that closing institutions has not resulted in sufficient services in the community to allow people with psychiatric and intellectual and developmental disabilities to flourish.

This is an excerpt from a 2013 article from VOR , “Will it be different this time? Deinstitutionalization’s Past: A Reason to Pause and Reconsider”:

First, Bagenstos argues that one measure of the success of deinstitutionalization is the sheer numbers of people with I/DD who have been deinstitutionalized and the numbers of institutions that have been closed since 1967:

"[D]einstitutionalization advocates have essentially won the old battles for the closing and downsizing of large state institutions for people with psychiatric and developmental disabilities . . . the population of state institutions now stands at approximately 16% of its peak, the population of state and local psychiatric hospitals stands at approximately 9% of its peak, and these numbers continue to decrease."

Bagenstos goes on to admit, however, that the political alliance between deinstitutionalization advocates and fiscal conservatives meant certain failure for the advocates’ second goal, “to develop an array of services and supports in the community to enable people with psychiatric disabilities or intellectual/developmental disabilities to flourish.” 

It should not be surprising that the coalition of deinstitutionalization advocates and fiscal conservatives largely achieved their goal of closing and downsizing institutions and that deinstitutionalization advocates were less successful in achieving their goal of developing community services.

Even if some deinstitutionalization advocates were initially unaware that they had entered into a “devil’s bargain” with fiscal conservatives, unconscionably, closure efforts continued even after it became apparent that widespread tragedies were befalling fragile individuals with I/DD developmental disabilities in inadequate community settings. 

Supporters of the HCBS Settings Rule seem to be making their promises of improved services and better lives for people with disabilities contingent on the idea that savings from the closure and elimination of specialized congregate (group) settings in the community will result in the redistribution of funds. It is politically easier for advocates to call for the closure of programs that do not meet their criteria of “true” integration and inclusion than to confront the reality that the community system of care for people with I/DD is underfunded and to a large extent broken. Many of the organizations promoting their interpretation of the Settings Rule also get a significant amount of funding from government agencies that fund programs under the DD Act. They know better than to bite the hand that feeds them by advocating for politically difficult but necessary solutions to the crisis in community care.

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See also, 

“Will it be different this time? Deinstitutionalization’s Past: A Reason to Pause and Reconsider” from VOR, 2013, including footnotes and references.

"What does the ADA Integration Mandate really mean?", The DD Newsblog, 4/10/16

VOR documentation of "Widespread Abuse, Neglect and Death in Small Settings Serving People with Intellectual Disabilities - 2015 to Present" 

Samuel R. Bagenstos, The Past and Future of Deinstitutionalization Litigation, 34 Cardoza L. Rev. 1 (2012)