This article will discuss the need for appropriate housing for adults with Autism. New and emerging programs will be explored. In full disclosure, this writer is the president and founder of Indie Living, Inc., a housing program currently in the early stages of development in New York.
Over the next decade, the CDC estimates that 500,000 teenagers with Autism Spectrum Disorder will age out of their school-based services and move into adulthood. As adults, the need and desire for person-centered housing opportunities is growing exponentially. An estimated 80,000 individuals sit on waiting lists that can be as long as 15 years. The number of individuals on waiting lists is expected to grow as the prevalence of Autism is predicted to increase by 15% over the next ten years. The discrepancy between availability and need is an ever-expanding chasm (Autism, eParent Connect, 03/16/2018 03/12/2018).
Mandy H. Breslow, LCSW, MS Ed.
Michael H. is a 51-year-old man who lives with his aging parents. He is my brother and he has Autism. His housing options are limited by availability and appropriateness. It is likely that he, along with 69% of adults with Autism, will continue to live with parents or other family members indefinitely, unless dramatic changes take place.
In 1972, a young reporter named Geraldo Rivera managed to sneak into the infamous Willowbrook State School, which turned out to be, at best, a warehousing facility for individuals with intellectual and developmental disabilities. The reality that was exposed was that Willowbrook was a brutal, abusive and dehumanizing facility that cared nothing for the people who lived there. As a result of this expose, the process of deinstitutionalization began. When Willowbrook’s doors were finally closed in 1987, residents were placed in community-based housing. The options available were group homes, adult homes and supportive apartments. In the 33 years since, these models have not changed, despite the changing and growing needs of this population.
This begs the question: what happened? One theory is the unexpected, dramatic rise in prevalence. According to Science Daily, the rate of children diagnosed with Autism was 1 in 150 in 2000. Current estimates put that number at 1 in 6; nearly double in less than 20 years (Science Daily, 2018). As our understanding of Autism grows, we’ve become more adept at diagnosing the disorder at earlier ages and have realized that Autism occurs on a spectrum, rather than a static, one-size-fits-all disorder. Agencies charged with the task of providing housing for these adults were overwhelmed and underfunded. Salaries for professional and support staff remained low, further limiting agencies by creating staffing shortages, or hiring under-qualified workers. Rising rates, limited funding and poorly paid employees combined to create the perfect storm for today’s housing crisis.
In order to meet the current and future demands for housing, we need to look outside the box at new and innovative concepts in housing models. The government, which has historically funded housing programs, proposed in it’s 2019 federal budget a cut of $763 billion to Medicaid over the next ten years. People with developmental disabilities rely on Medicaid funds to pay for housing, education and vocational training, as do the agencies that provide these services (The Center for Public Representation, 2019). This will have catastrophic effects far beyond the crisis we have now.
Other issues affecting the availability of housing for this population include affordability, accessibility and discrimination. Average rent for a one-bedroom apartment is 104% of the average SSI benefit. This creates a real barrier to individuals in need. Lower income families often do not have the resources to access and navigate the system, which further precludes them from finding housing. Finally, there is the NIMBY attitude that faces organizations and their participants. The fear and stigma of the disabled block real estate opportunities (Mary E. O’Byrne, Esq. and Stephen W. Dale, Esq., 2019).
In the absence of adequate government support, the private sector has started to step in and create new housing opportunities. The common thread between them is that they are developing programs that address the needs of the whole person. Current models are outdated. Community residences provide a sense of belonging and acceptance in a communal living environment. However, they offer little in the way of independence. These programs are generally reserved for individuals with more significant needs. Supportive apartments offer varying levels of independence, but very little opportunity to be a part of a community. Newer housing models understand that in order for an individual to reach their fullest potential, they must incorporate community and independence into one program.
Disabled people need more invested in their education, housing, job training, transportation, assistive technology, and independent-living facilities. Governments earn back this investment – and more – by making people with disabilities economically productive citizens.
– Jesse Ventura
There are programs opening up throughout the country to address this need. Programs in California such as The Mission Project, Camphill, Sweetwater Spectrum and Legacy Homes are innovative models that seek to provide a person-centered alternative to typical housing. In other states, similar ventures are shaping the face of housing. In Arizona, Florida, Colorado, District of Columbia, Utah and New York, programs are also opening up. Many of these are already full, while others are still in the development process. The common goal is to allow adults with Autism to live full lives, while integrating into their communities.
Aside from the social and moral imperatives to create housing opportunities, there are financial benefits to it as well. Typically, the average cost to place and care for someone in a group home is approximately $90,000 to $140,000 per year. Independent living programs with on-site and community supports could save tens of thousands of dollars per year per person (Josh Kovner, Hartford Courant, 2018). This frees up resources in order to service more people for the same cost rather than operating at a deficit, or worse, leaving many sitting on waiting lists and causing economic hardship on families. In a report issued by Autism Speaks, it costs families an average of $60,000 per year to care for a child with Autism. The majority of this cost is accounted for by the lost wage potential involved in providing care for the child (Autism Speaks, 2017).
With the clear economic, social and societal benefits of new and expanded housing communities for adults with Autism, why does there continue to be such a gap in need versus availability? While some of those theories have been discussed in this article, it remains clear that there are many factors that converge to create the current crisis we in which we currently find ourselves. And in order to meet the growing demands of a growing population of adults with Autism, we, as a society must step up our game while we embrace and support new housing initiatives that strive to create a more independent, self-determined and integrative life and living environment for our children. Because, as stated by Mahatma Gandhi, “The true measure of any society can be found in how it treats its most vulnerable members.”
Mandy H. Breslow, LCSW, MS Ed., is Founder and President of Indie Living, Inc. She is also an Independent Special Education Consultant and Counselor.
Mandy H. Breslow, LCSW, MS Ed., is a social worker in practice for 22 years. She earned her Master’s in Social Work in 1997 from Adelphi University and her Master’s in Early Childhood Education in 2008 from Touro College. Her work has focused on improving the lives of children and families dealing with Autism. Mandy’s professional career includes direct service to clients both in mental health facilities and in their homes; community education and advocacy and teaching original curricula to psychiatry residents. She has a private practice in Long Island, NY and is the founder of a developing housing initiative called Indie Living. Mandy lives on Long Island with her husband and has two teenage sons with Autism.
References
Autuori, Donna M., “Building Supportive, Person-Centered Communities for Adults with Autism” www.eParent.com, 2018
CDC Data and Statistics, www.cdc.gov, 2018
Reimann, Matt “Willowbrook, the institution that shocked a nation into changing its laws”, June, 2017
Johns Hopkins University Bloomberg School of Public Health. (2018, April 26). U.S. autism rate up 15 percent over two-year period: Researchers say racial and ethnic disparities are narrowing. ScienceDaily. Retrieved May 9, 2019 from www.sciencedaily.com/releases/2018/04/180426141604.htm
O’Byrne, Mary E. Esq. and Stephen W. Dale, Stephen W. Esq., 2019 “Getting Creative: Models for Filling the Housing Gap, 2019
Jesse Ventura. (n.d.). AZQuotes.com. Retrieved May 08, 2019, from AZQuotes.com Web site: https://www.azquotes.com/quote/302218
Kovner, Josh. “Bill Would Encourage Housing Options for Group Home Clients”. Hartford Courant, 2018
Autism Speaks, www.Autismspeaks.org
Mahatma Gandhi. (n.d.). AZQuotes.com. Retrieved May 12, 2019, from AZQuotes.com Web site: https://www.azquotes.com/quote/877037
Our local government in Montgomery County Pennsylvania is outlawing our use of an RV for therapy to teach a young adult with autism how to live independently. They refuse to permit such therapy, and recently they pushed a family with a 4 year old with autism to live near an unprotected watercourse and the child drowned.
What can be done to fight such bigotry?
I believe that’s because RV’s are not apartments. They don’t have fixed addresses and are not the typical apartment structure. They are still outdoors and technically homeless, which puts them at risk for a variety of situations. What if a neighbor complains or the neighborhood associations demands it be moved somewhere else? My son is an adult with autism, and I myself wouldn’t feel comfortable with him living in a RV.
The residential zoning that is involved has in the preamble that as a matter of right you can have recreational vehicles on your property, and there is no criminal law that says its a crime to temporarily park your RV on your driveway behind a fence in your backyard. When a local government has its code officer claim to be a member of the police, and in the name of the Commonwealth uses a civil zoning code to criminalize parking a vehicle on your driveway and requiring a building permit with a property survey each time you park it after going off the property, at the cost of $2500 per permit. A local civil ordinance is not a state criminal law, but now it is. Should the state dictate what vehicle you can park on your driveway? Should your neighbors tell you what you can park on your driveway? If the zoning and homeowners rules allow it, and even if they did not, it would not be criminal – only civil enforcement. This impersonating a police officer to defraud the courts and erode our basic framework of land development, has overstepped government authority. The same law firm that fights parents for school districts, should not also represent other government entities, and use that to retaliate against people with autism, especially someone under the waiver is using a therapeutic means to be independent under the supervision of a BCBA.
[…] there are many options for housing. But in practice, families are faced with multiple barriers and challenges that limit their options. These considerations include the […]
Using mobile equipment for therapeutic purposes such as hyperbaric chamber that is on a trailer should not need a building permit. Using an RV as a classroom is to teach independent living skills, and many schools have such modular classrooms, but those are on permanent foundations, and even then no building permit is required. This is a discriminatory act to keep those with autism out of the area.
Hello , my current situation is my 20 year old autistic grandson , net year he will be 21 and maxed out of the school system , his mother passed away in Feburary of 2022 , leaving me as caretaker , I am 64 and believe it would be in his best interest to leave how to live on his own as soon as he graduates ,although we are having a hard time finding anyplace in berks county to do so , we live in berks county Pa and waiting lists are extremely long , any other suggestions would be greatly appreciated !