Occasionally it is necessary to roar, and roar loudly, and now is one of those times.
States across the nation, including The Daniel Jordan Fiddle Foundation’s (http://www.djfiddlefoundation.org) home state of New Jersey are in the process of establishing Statewide Transition Plans (“Plans”) that will affect the lives of thousands of adult individuals diagnosed with Autism and other disabilities (“adults”) and those who are aging to adulthood in the next generations. These Plans have been federally mandated and apply to States receiving Medicaid Home and Community Based Services (“HCBS”) funding that is used to finance in particular residential and employment opportunities for adults. Basically every State in the nation will be affected as most receive such funding. The core of the mandate is that states receiving Medicaid funds are required to meet the needs of individuals who elect to use these funds for long term services and supports in home or community settings rather than in institutional settings. On its face, this sounds good, even wonderful. No more of the Willowbrook style institutions portrayed in Geraldo Rivera’s riveting reporting. No more isolation and segregation of people with disabling challenges. On its face, it sounds like human rights are being served, but are they? And is this mandate truly as person-centered as it proclaims?
The Centers for Medicaid & Medicare Services (“CMS”) from which this mandate derives may have all the best intentions in the world, but intentions not grounded in knowledge can be dangerous. Dangerous is a good word here, and I am not being an extremist to use it. Without going into the minutia of the CMS ruling, one of the most controversial areas is that States must provide residential options for individuals within the community, and there is a general laundry list of requirements, some that leave a great deal of room for interpretation. In New Jersey, for instance, the proposed state transition plan has interpreted the ruling to mean that there can be no more than 4 people per residence, which may be expanded to 6 for programmatic reasons. Why is this dangerous? Well first, in the world of Autism, one size does not fit all and this limitation is one-dimensional. Autism is diverse, and the needs of one person are vastly different from those of another person diagnosed on the spectrum. For some Autistic individuals living in a residence with 4 other people in the community would be fine but for many others it would be dangerous. Many adults require 24/7 support and are not safe in group homes or apartments with a roommate. These individuals need much more care than that, for instance: they take multiple medications that they cannot manage on their own; they do not have independent life-skills; they do not have the cognitive acumen to live on their own safely; and they are behaviorally ill-equipt to manage independent life in the community. Yet CMS and its ruling lump everyone into one category as if each person had a similar profile, and this is based on what?—certainly not knowledge about Autism and how it affects a diverse population of adults. Supposedly stakeholders will be able to weigh in on the effectiveness of their residential setting however if there are no options that exist that are suitable where will they turn and where will they live?
A suitable and safe option for the many Autistic adults who are severely challenged and who require 24/7 care and supervision is what is known as congregate housing where they and their peers can live in a safe, supervised environment that can provide the supports and services they need. THESE ARE NOT INSTITUTIONS and that is the misconception that is being harbored. There are assisted living and campus style programs for instance throughout the United States that are based in communities. These farmstead, suburban and urban enclaves have well-designed programs, employment opportunities and training and recreational activities that are appropriate for the individuals who reside there. They provide safe and varied living accommodations including apartment style homes and group home style homes. People are not cloistered in these sort of residential places, they are in the community as much as possible but they also enjoy the benefits of being in their own tight-knit community with familiar friends and staff. Is every place perfect? No. However, the key components that make for a safe, happy, healthy and yes, as independent a life as possible, are there. (Furthermore, one could argue that individuals living in these settings are less isolated because they are always around other people rather than in a home where they only see a small number of people in their living environment on a daily basis.) Yet if the Plans interpret the CMS ruling as New Jersey is, these types of residential options would not be in compliance.
How can we, as a community at large, claim that we are providing the best lives possible for people living with disabilities if we do not listen to their voices, and that means all of their voices, which in many cases is the voice of a parent or caregiver. It seems to me that Big Brother has mainly listened to the most well-spoken advocates but what about those who cannot speak? And aren’t those who cannot speak for themselves the ones most at risk if the proposed Plans are enacted? How can we as a society claim we are caring for our most vulnerable citizens if we make decisions for them based upon misguided assumptions and a lack of in-depth understanding of the daily challenges these individuals face? We cannot accept only options that will fit a certain portion of the population of individuals and that thwart the development of new models.
I have focused here on only one specific mandate that States throughout the nation are going to have to wrestle with, but there are several issues, including those relating to day programs, that hark back to the same problem of Big Brother being one- dimensional in its application of policy. You may ask, how will this affect you as a citizen who does not have an adult family member with a disability? My answer to you, is that it will affect you greatly, and this is based not only on the numbers of adult individuals directly impacted in your community that is ever growing but also and even more importantly it is a matter of moral obligation.
The families of our most vulnerable adults who will be directly impacted by the Plans are living in fear for the safety and well-being of their adult children because Big Brother is calling the shots without knowing their child and his or her needs while espousing that its direction is in their child’s best interest. The CMS ruling is cutting off community- based options by offering a very limited menu of uninspired options. Real estate developers of all types of residential opportunities are poised to create these options but cannot and will not in the restrictive paradigm that exists.
Please join me, and The Daniel Jordan Fiddle Foundation in our efforts to first and foremost support all adults so that each can live the fullest life possible that honors and respects their individuality. Go to our website to hear their voices and those of their families as I interview a panel of stake-holders at a Congressional Briefing https://www.youtube.com/watch?v=fLGc7pEEzWA&feature=youtube_gdata The eyes we open through our efforts today will be the vision we aspire towards for all.
Here is a link to CMS ruling: