Rolling Stone Video: When the Autism Generation Comes of Age
"Luke greets me in the hallway, thrusting a book in my direction, then snatches it back and darts into his room. It's been two weeks since I've seen him, and what I desperately want to do is grab him up and hug him till he howls. But because it's been two weeks – and because he is autistic – I must begin again, from the start line, with my son...."
My name is Mike Sweeney, and I am the father of an 18 year old Autistic son, Dustin Sweeney. Right now, Dustin is "school age", and he will "fall off the cliff" on September 20, 2018 when Dustin "graduates" from Hawthorne Country Day School to the adult world at 21 years of age. I am currently taking a "Housing Navigator" class to educate myself on the nuances of creating/building/developing housing and communities for the post-21 aged Developmentally Disabled adults in New York State. The course is being taught by:
John Maltby, Director of Community Support Network at the Westchester Institute for Human Development. John is also the father of a 42 year old Autistic son. While the Housing Navigator course has an academic and historical element in the course outline, John adds in the practical side of developing housing in New York State with his experience of developing housing for his son. John's personal and professional work has been done in cooperation with the New York State Office for People with Developmental Disabilities.
Carol Napierski, Senior Director of Administration at the New York State Association of Community and Residential Agencies.
This Rolling Stone article and video came out last week, and it has generated much discussion in our Housing Navigator class, and the Developmentally Disabled & Autism communities. With John Malby's permission, I have published his personal comments on where WE (parents, residents, future residents, Providers, and Caregivers) stand in New York State.
The Rolling Stone Excerpt on New York State Housing for the Developmentally Disabled
Self-Direction as a Solution
Response from John Maltby M.S.
The article is simultaneously thought provoking and exasperating, but just as the article in the Atlantic last year, it is likely to provoke much more interest than any academic journal article and it is important that it be taken seriously. At its core, there are some very important points that the author makes. That said it is also important to make sure that the statements made are accurate, and do not mislead.
The exasperation comes from the factual errors, and the perception errors. For example:
- The “school” where his son is institutionalized is clearly in need of reform, including some steps towards meeting state mandated transition planning and there should be help for the family there, now, paid for with mandated funding.
- The cause of people with ASD and other I/DDs is not well served by hype about an “epidemic”, in fact in my view, at this point in the public recognition cycle it is harmed by it. We need sober fact and history such as that presented in “Neurotribes” by Steve Silberman published last year, which digs into the rise in apparent prevalence and makes sense of it in the light of expanded DSM criteria, research, advocacy and money. It is well worth reading.
- Terming this “the third decade of the autism age” is misleading. It certainly ignores history and the work of pioneers like Kanner, Asperger, Sullivan, Wing, Bauman, Lord, Rapin, Courchesne and a long list of others going back over 70 years. Temple Grandin is now 68, Mark Rimland is 60. My own son is 42, and that puts him in his fifth decade.
- The waiting period for a “Medicaid slot” in New York is not long. In NY State, a person qualifies for Medicaid when they get SSI, which may take a couple of months. The waiting period to be enrolled in Medicaid Waiver once the person is deemed eligible for state services is a similar period. The author is referring to what used to be known as the “NY State Cares” list – a waiting list for certified group home placements that was not based on priority or immediate need but was simply a way to put down a marker for the future. In 2015, the NY State budget required OPWDD, the state DD agency, to review the list to identify actual levels of need and urgency. The state produced the “Residential Request List”, which defined categories of need and priority and concluded that the number of people in need of certified residential settings was significantly smaller than the “waitlist” had indicated. The number is still high and the certified group home access process is still problematic but it is not anywhere near the number highlighted in the article.
- "Self Direction" in NY is not “parent run”, although typically the parents are the primary advocate, and it involves a host of professionals. If they aren’t doing their job that needs fixing but they should be there. It is not that new, - the first pilot began almost 20 years ago and the forerunner of Self Direction, “Consolidated Support Services” began in 2003. Implementation has been a mess, and it had moved from Provider Directed Services to Self Directed Services. It has been met with opposition from vested interests, and it has had a slew of implementation issues that are especially highlighted by the stories of the two families in Brooklyn who have been pushed to the edge of desperation. Self Direction needs to be fixed, and the article brings that home. This is not a side issue, it is THE issue. My guess is that the Massachusetts funding follows along the Self Directed path, simply because that is how funding is going in 2016.
- This connects to another concern. The “strike against intentional communities” was not something that CMS dreamt up in 2014. It stems from legislation going back to the Rehab act of 1973 (and before) and including the ADA in 1990, the Olmstead decision of 1999, the DD Act of 2000, the budget reconciliation act of 2005 which created Money Follows the Person and the Affordable Care Act of 2010. It is rooted in research into best practices, experience and the long history of institutionalization and the abuse that institutions seem doomed to foster.
- Most importantly, we have the Shared Living option in NY and we have folks who have been doing it for some time. Not just in “Family Care”, which is basically adult foster care, but in creative ways in many different combinations. Those of you who have been through the Housing Navigator course or who have used the NYSACRA Shared Living Toolkit know how Shared Living can be implemented in New York, and for those outside of NY there is still valuable information on Federal labor law and other useful information in the toolkit, see below:
Why do I think that even with all of its flaws this article is worth attention?
- It highlights the yawning gaps in how we educate and support young people with significant I/DD and the mess we have made of transitioning young people from childhood to adult life. We need to completely rethink how we handle “transition”, and how to have education systems that are rooted in entitlement legislation interact with adult systems that are rooted in eligibility, and how to provide accurate and relevant information to families who currently have to grope their way through a miasma of misinformation and bureaucracy while each system blames the other.
- It highlights how much work remains to be done in educating people with I/DD their families and the provider industry in providing services that are individualized and how they are funded and how that funding can be sustainable and secure. The answer to the parent question of “what happens when I’m gone” is not more institutional settings but finding ways to build safety nets and networks that we can sustain and that keep people in our community.
- It highlights how much of our provider industry has absented itself from the reality of system change and clings to systems it knows while abandoning families that need to be supported.
- None of the legislation, regulation or experience regarding smaller less institutional settings, including “planned” or “gated” communities is going away. That said, it is time to look at scattered site options, communities that are genuinely integrated but have an “intention” in providing community based living. Most importantly, the advocates for such communities need to find and include protections that will guard against a future of reduced funding, reduced staffing, community estrangement – all of the factors that over time erode the best of good intentions and lead to the sink of institutionalization. Given all of the history it is incumbent on those who seek to create intentional communities to demonstrate their effectiveness rather than simply demanding a continuation of childhood entitlement.
- And I think we need to change the tone of the discussion. We don’t make progress by railing against the state or by making the case for our sons and daughters and the people we serve through hyperbole or victimhood. We make the case by having an adult conversation that includes discussion of the ills of the past, public funding priorities, and that includes all of the stakeholders, the public, the state oversight bodies, provider agencies, direct support professionals, families, but most importantly, people with I/DD themselves.