A report on the meeting of the Autism Housing Workgroup of the Interagency Autism Coordinating Committee
By Jill Escher
You are dying of thirst in the Sahara, dragging your parched body through the dune, and then you see it glimmering ahead: a lake atop the burning sand! But as adrenaline pushes you forward to salvation, you see the truth. It was all a mirage.
Such was my impression of autism housing after participating in the Autism Housing Workgroup of the Interagency Autism Coordinating Committee (IACC), which met for a day of presentations on July 23 near Washington, DC.
Now, don’t get me wrong. It is great news that the IACC is spending time and effort to look into the autism housing crisis. Major kudos to Alison Singer, Samantha Crane, and other IACC members for pushing this urgent topic to the fore, and I was certainly pleased to serve on the group in my capacity as a scattered-site autism housing provider.
But the major take-away from the day was unmistakeable: we are facing an autism housing crisis of epic proportions, and while many promising models have been developed, the options fall dramatically short of what is needed, particularly for autistic adults with challenging behaviors.
Singer opened the meeting explaining this transient effort was not intended to solve our crisis, but instead to shine a light on the growing demand for housing and the emerging menu of models that can help serve the diverse population of adults with autism. Susan Daniels, director of the Office of Autism Research Coordination (OARC) stressed “this is a starting point for committee’s discussion of this topic.” A summary of the proceedings will be provided to the next iteration of the IACC if and when it is reauthorized by Congress (via Autism CARES Act funding).
Here are some not-necessarily-in-order commentary-strewn highlights of the meeting (pardon this short list, not enough time or space to reiterate everything).
Samantha Crane, Director of Public Policy at ASAN emphasized a point that pounds in the heart of autism parents and adults with autism alike — the need for affordability, community, and engagement and freedom from isolation, neglect and abuse. While we may quibble about how those ends may be achieved across our entire population, there is no question we share overlapping goals, and also the belief in person-centered planning and outcomes.
Eschenbacher explained that DD is defined by substantial functional limitations in 3 or more areas of major life activity.
Heidi Eschenbacher, PhD, Institute on Community Integration at University of Minnesota, provided some background data. She estimates that 7.37 million in the U.S. have I/DD and nearly 7% of U.S. children 0-17 have I/DD and DD (…a gigantic number!). In terms of those residing in state institutions, the peak was in 1967 with 194,650 living in institutions. As of 2015 the number is down to 19,502. Conversely, HCBS waiver utilization skyrocketed to 807,462 (2016), while ICF/IDs declined from 140,752 to 74,614 today.
Desiree Kameka, Director of Community Education and Advocacy, Madison House Autism Foundation (and Autism Housing Network), emphasized a great number of shortcomings in our system, for example:
People do not understand their options, or how to navigate our extremely complex, fragmented system.
She frequently receives calls about autistic adults who are losing their primary caregiver (when a parent becomes infirm or dies). “This is happening more and more,” she said, and as someone who receives these desperate calls and emails all the time, I can vouch for the same.
Many adults disabled by autism fall through the cracks because their IQs are too high to be eligible.
Providers do not want to serve individuals with history of self-injury and aggression. Those individuals become isolated in the family home, and so are their caregivers.
Most adults with autism have NO CHOICE about housing because of the dearth of options and are forced to stay in family home.
Scattered site house is largely unaffordable.
Mate crime and abuse are rampant.
Institutional abuse and attitudes can happen in any setting. This is a cultural phenomenon: “The walls do no abuse people. People abuse people,” she says.
Autistic adults can thrive when they are given the opportunity to live their own life, but the status quo is not meeting the needs.
Kameka noted a decline in NIMBYism, but I’m not sure I’m inclined to agree. I regularly see community opposition to new DD housing projects.
She cited alarming statistics from some Colorado counties where 12.4k live with caregivers over age 60. Yet over the past 15 years fewer than 3,500 were given supports to move out of the family home.
In discussing autism housing, she stressed we need clarity about vocabulary, what we mean by provider controlled, consumer controlled, consumer directed, host family (provider controlled), shared living/roommates, and paid neighbors, for example.
Property types include, among others, accessory dwelling units (ADUs), bequeated family home, scattered site, owned homes cohousing, intentionally neurodiverse neighborhoods, planned communities.
The biggest barrier to community access if the lack of community skills of the autistic adult.
Person-centered planning is what matters most. The number of people in a setting is not a proxy for outcomes.
The amount of abuse suffered by adults with I/DD is “ridiculous” and we must do more to prevent abuse.
We need to consider the costs of not providing housing, because without efficient options, people end up in more costly settings.
We are facing a huge direct support provider (DSP) crisis, in terms of funding, training and career paths.
At what point are the states liable for lack of compliance with Olmstead (ADA) by failing to offer viable residential options for adults with I/DD?
We must focus on actual outcomes in service delivery models, not in abstractions.
Ivanova Smith, an adult on the autism spectrum commented that it’s important for adults with I/DD to move out of the family home and have an opportunity to grow up and become independent of their families.
Amy Lutz, member of the board of National Council on Severe Autism (NCSA), noted that there is no good data to compare rates of abuse and neglect among various settings and service models. Studies have been flawed, with policy decisions are based on values, not data. For example there is no data indicating that living in an apartment is safer than living in an intentional community. Lutz also stressed that most autism housing models exclude those with severe behaviors, such as aggression, self-injury and property damage. We need to explicitly offer models that include that sizable portion of the spectrum.
Jillian Copeland, co-founder of MainStreet Connect in Maryland, provided an oral public comment on her group’s 70-unit apartment building with 25% of units set aside for DD adults. It is a housing model and not a service provider, but the project includes a community center with 10,000 square feet of community space for social, educational, and recreational uses. They are a “BYOI” model — bring your own independence, since they are are not a service provider.
Susan Jennings, founder of Keeping Individuals with Intellectual Disability Safe (KIIDS) shared an oral public comment that her son is one of those who kicks down doors and elopes into traffic. He has been discharged from six different group homes, as none could manage his challenging behaviors. She cited systemic shortcomings to community group home, including severe abuse and toxic over-medication. His salvation was an ICF, and she laughed at the idea of “forced institutionalization” since “You can’t force your way” into an ICF since “they are closed or closing.”
She said her son is far from an anomaly. About 40% of the autism population exhibits severe challenging behavior. Because of the lack of options, these adults often languish in psychiatric facilities, hospitals, or jails. The Olmstead Supreme Court decision recognizes that the ADA does not impel states to close institutions, and indeed that some individuals may need these setting for crisis periods or permanently. They must remain available, as they offer a superior form of care for a segment of the population, she said. There are very high costs to keep some adults “in the community” with too little assistance and supervision. “The state center is a bargain compared to the community,” and also provides her son a much greater degree of personal freedom. Also, unlike community settings, ICFs must meet rigorous standards to be certified. She drew attention to the direct service provider (DSP) shortage: “You are asking people to handle life-and-death emergencies at fast-food wages.” Finally she denounced the “cruel movement afoot” to defund out-of-home options. If parents do not have the ability to care for severely affected adults — who does? We must offer a full range of services.
A written commenter suggested a system of long-term care insurance, or an autism care fund to cover long-term care for adults with autism. Autism is treated the same as intellectual disability but is different it involves more intensive needs.
Jill Escher (moi) commented that there are two overarching issues in autism housing: quantity and quality. We must pay attention to quantity before nitpicking about qualities. The dramatic surge in autism has profound implications for expansion of our system, which is already at capacity. According to California data the adult autism population will quintuple over the next 20 years. Sharply increasing prevalence, combined with aging and inevitably dying parents portends a catastrophic crisis.
California DDS Autism Prevalence by Birth Year of Males and Females Born in the State
The autism tsunami, reflected here as prevalence in California, by birth year. Autism has become so prevalent that more than 2% of boys born in California in 2012 have ended up as autism cases in the Department of Developmental Services. The drop-off after 2012 births reflects the lag of cases entering the system, not a decrease in prevalence. (Source: California Department of Public Health, based on DDS data)
Max Barrows, a self advocate from Vermont, stated that a home should be not considered if more than four people live in it, that adults with autism should have the right to privacy and access to the community.
Dr Joshua Gordon, director of the NIMH and chair of the IACC, stated that there are lessons to be drawn across the full continuum of care, and given the urgent need to expand the number of units, we need scalable models that work for different needs.
Kim Musheno, VP of Policy at Autism Society, said that settings should depend on individuals’ desires and needs but that a big part of housing quality resides in the direct support professions. “We are not paying them enough to care for these clients.” Functional needs are critical to consider, not a diagnostic label.
Denise Resnik, co-founder of FirstPlace, AZ, stressed that no matter how you dice it, supported autism housing is very expensive and will require getting the private sector involved. Autism housing today is like where senior housing was decades ago, it’s an emerging marketplace.
Melissa Harris, Centers for Medicare and Medicaid Services (CMS) spoke by telephone about HCBS rules. She said waiver-funded services are “not a one-size-fits-all conversation.” It involves different needs, bringing a different idea of what community looks like. CMS is not looking “to inject a standardized way of living” but rather being driven by the person-centered plan. States have until March 2022 to achieve compliance, and the revised Guidance she hopes solidifies the idea that a variety of settings can meet the settings criteria. HCBS regulations are not meant to rid the country of a certain model or infringe on personal choice. It’s designed to say that the “individual-ness of the person” must be respected by the provider and the infrastructure.
Lori Ireland, incoming chair of the Autism Society of America, expressed concern that perhaps no other populations receiving CMS funding are subject to settings restrictions like those with disabilities.
Then followed a succession of presentations about housing models.
Denise Resnik wants housing and community options to be as bountiful for those with ASD as for everyone else. First Place is a residential private pay, private lease tuition program in Phoenix for those seeking to acquire skills to live independently. The residence has a 24/7, everyone has their own room, and the programs and residents are deeply connected to the broader community. The building hosts many autism-friendly amenities and features (my favorite were the auto turn-off stove and ovens). FirstPlace sees itself not only as a real estate developer but also as a community developer, creating community within a community but also a more autism-friendly region, including adding hundreds of employment opportunities .
Krista Mason, founder of Benjamin’s Hope, Michigan, discussed being the mother of a large young man severely affected by autism. Over many years she helped develop Ben’s Hope, a residential property with many autism-friendly amenities and opportunities, based on a vision of community, engagement, or purpose. The farming element came from Ben and what’s important to him, and not from any interest Krista has in growing food. People often remark this development “feels different” — “it isn’t about the physical structures, it’s about our values” which focus on respect for the individual and purposeful engagement. Medicaid covers 75% of the costs of care.
Terry Hamlin, director at Center for Discovery in New York state, an agricultural college and continuous learning community that deeply engages with the local community. The Center serves some of the most challenging individuals in the state, including with severe aggressive, maladaptive behaviors. She showed some examples where the program successfully addressed health problems and anxieties and vastly improved quality of life for adults. Stress reduction—for the individual and the caregiver—is essential.
Lindsay Johnson, from the Kelsey in San Jose, California, described this project which has not yet broken ground. This apartment complex will feature a range of incomes and abilities. She observed that “cities crave these projects,” which create inclusive options under the umbrella of affordable housing. She encourages housing advocates to work actively with housing developers who have the experience to get these projects done. “Developers need inclusion-minded individuals to help guide them."
Jim Whittaker, Arc of Jacksonville, Florida spoke on this 121-resident development, which serves those who can live independently with just enough support to get by. The Arc of Jacksonville village is walkable and transit-friendly. The residents live semi independently, with 5-8 hours a week of supported living coaching. It also has a 12,000 square foot community center, pool and other amenities. It offers very low rents but has a lengthy waitlist and almost no turnover. Eighty of the residents are employed in the community.
Matthew Osborne, of the Faison Center in Richmond, Virginia, a 45-unit complex with one-third of units set aside for adults with developmental disabilities said his residents have basic living skills but receive some supervision. 72% are employed, 83% receive a Medicaid waiver for supports.
Maedi Tanham Carney, Integrated Living Opportunities, Washington DC area. ILO is basically what we in California would call an “independent living services” agency. ILO does not provide real estate but instead a range of supports. About half the families use a waiver to pay for services. One goal is to create “long-term facilitation” for after parents pass away. I think this particular question — who will oversee care, act “in loco parentis,” after we parents die — deserves its own IACC meeting! It’s a giant question mark haunting countless thousands of autism families across the country.
Mary Anderson, ABLE, Inc North Dakota. This agency began in 1985 to help move residents of a state institution into group homes. Many were unhappy in the group homes, so they use a multi-family model. While choice is important, she notes that for all people “choice is limited to affordability.” She reality-checked the idea that scattered site housing is optimal by noting the sharply higher staffing costs involved.
Some of the housing advocates at the meeting (female edition?) were Alison Singer (IACC member), Desiree Kameka (Autism Housing Network), Amy Lutz (National Council on Severe Autism), Lori Ireland (Autism Society), Jill Escher (Claradon Properties) and JaLynn Prince (Madison House Autism Foundation).
As Amy Lutz said toward the close, it was remarkable how few options serve those with severe and challenging behaviors. There was little to ”alleviate the panic” of families; we need a discussion that focuses directly on the needs of this population. Alison Singer said the IACC has some purview and can make some inroads to open doors to options for all members of the spectrum.
After the meeting several of us commiserated about the need for a national policy agenda on this urgent issue. It’s time to roll up our sleeves and start the long-overdue process of reform.