According to the Centers for Disease Control and Prevention (CDC), 500,000 teens with autism will age into adulthood over the next decade and housing will become one of the greatest concerns for them, their parents and other caregivers. Right now, an estimated 80,000 adults with autism in the United States are on waiting lists for publicly-funded residential placements and services. The waiting periods can run up to 15 years and the number of those waiting is only expected to grow. Where housing does exist, it isn't exactly what most parents or their adult children with autism want.
One father of 17-year old triplets, one daughter and two sons, both of whom are on the autism spectrum, has made developing housing options for his sons and other young adults with autism a top priority. In 2015, Charles Massimo, a wealth manager, founded Long Island Autism Communities, Inc., a privately-funded, 501(c) (3) not-for-profit. Its mission is to provide better housing solutions for adults on the autism spectrum that are safe, supportive, offer every opportunity for a fulfilling life, and provide a continuum of care when parents and guardians no longer can.
FILLING A VITAL HOUSING NEED AND MORE FOR ADULTS WITH AUTISM
Charles Massimo, who serves as Chairman of Long Island Autism Communities and was recently appointed to the New York State Governor Andrew Cuomo's recently formed New York State Autism Spectrum Advisory Board, has the same goals for his sons as most parents of children on the spectrum. "I want them to have a healthy life filled with positive relationships and activities they enjoy. I also want them to be welcomed into a safe, supportive community which gives them access to opportunities for employment, recreation and for employment, recreation and socialization within the surrounding area," said Massimo. "And, equally important, I want to know that they will be taken care of when their mother and I no longer can." Without Massimo and others like him across the nation trying to create supportive communities for adults with autism, the majority of young adults with autism would be destined to a much less positive future. The National Autism Indicators Report of 2015 found that two-thirds of young people with autism do not have a job or plans for higher education; a trend that continues into their early 20s. One in four young adults with autism feels isolated, and 79% still live at home with parents or guardians, who feel a tremendous burden from this reality. These parents want their children's daily living and emotional needs met. They want their children living in a community where will be treated with care and respect.
While no two adults with autism have the same needs, there are common concerns among their parents with respect to their housing as illustrated in a survey conducted by the Charlottesville Region Autism Action Group (CRAAG). Many parents reported:
• Moderate to extreme concern about their children's abilities to live independently;
• Concern over day programs and supported employment options;
• Their child's need for assistance to navigate basic skills (e.g., cleaning, cooking, living with roommates, paying rent, etc.); and
• Worry that their child would be isolated and prone toward depression. Long Island Autism Communities conducted its own survey in 2017 to better understand parents' concerns for their adult children with autism. In response to the question, What are the three most important assurances we can offer you as you consider housing options for your adult child with autism?— parents responded:
• A safe living environment,
• An environment where my daughter would be happy,
• A place where my child could live in a peaceful environment, • An atmosphere respectful of his humanity with no mental or physical abuse,
• An environment that will care for my daughter after we no longer can,
• Emergency back-up staff,
• A setting with superior and well-trained behavioral staff to make sure he is safe and his medical and physical needs are met, and
• Round the clock activities to enhance his life. Professionals were also surveyed by Long Island Autism Communities. Their replies to the same question on behalf of adults with autism, included:
• Access to public transportation and services,
• Promote acceptance into the community,
• Offer opportunities for personal growth and engagement,
• Strong safety and security controls, and
• Planning for after parents die or are incapacitated.
It was not surprising that young adults with autism want to experience independence as many young people do. A National Housing and Residential Supports survey reported that nearly 60% of adults with autism would prefer to live in their own home with a roommate, although 30% said they would need support services daily. Feedback received from young adults with autism in the Long Island Autism Communities survey was consistent with these findings and also found that they wanted programs that helped facilitate interaction with their peers, both on and not on the spectrum, in order to gain diversified experiences and new friends.
PARTNERING WITH COMPASSIONATE DEVELOPERS
To begin creating housing solutions, Massimo, his Board of Directors, which includes other parents of young adults with autism, autism professionals and other members of the business community, have determined that teaming up with developers of apartments and other residential properties will be an initial, effective strategy. Across Long Island, there are numerous multifamily projects in development, under construction or in the planning stages. Massimo and his Board are carefully reviewing these projects to determine their suitability for Long Island Autism Communities. The organization is also remaining open and watchful for opportunities to create their own project on a large piece of undeveloped land where multiple residences can be built along with perhaps a clubhouse, garden, pool and other qualify of life facilities.
Besides requiring developers to understand and support the organization's mission, a key criterion is that a project be located in close proximity to a vibrant downtown area offering opportunities for employment, volunteering, socialization and recreation, as well as access to mass transportation and other important resources. In the design and construction of the residences, consideration will be to accommodate the sensory needs of individuals on a spectrum (e.g., light and sound sensitivities), as well as enable Long Island Autism Communities to create a secure, safe environment for its community residents.
One developer, Larry Gargano, has already stepped up and indicated a willingness to set aside a portion of an apartment complex he is building near Main Street in Bay Shore, New York for Long Island Autism Communities' first property. It is hoped that this first community will be completed by the end of 2018. Prior to that time, Long Island Autism Communities' professional team will have the tough task of beginning its selection process in deciding which individuals with autism will be its first residents. Since announcing the organization, there has been a steady stream of inquiries from parents of young adults with autism and older adults on the spectrum. The Programming Committee of Long Island Autism Communities, whose members include experienced autism professionals and parents of children with autism, has developed a very thorough screening and assessment process to determine what individuals would thrive in one of the organization's residences and if so, what individualized supLONG ISLAND AUTISM COMMUNITIES INTENDS TO BE A RESOURCE FOR INDIVIDUALS ACROSS THE SPECTRUM, BOTH LOW- AND HIGHFUNCTIONING PERSONS OF VARYING NEEDS AND INTERESTS. ports they need.
"There are so many factors to weigh and our goal is to find long-term housing solutions for those who want to become one of our residents," said Massimo. "We intend to be a resource for individuals across the spectrum, both low- and high-func tioning individuals of varying needs and interests. We will also look at whether they can be successfully integrated into our communities, and live well with others including potential roommates. In selecting residents, we will not accept any individual that could pose a threat to any others within the community."
LONG ISLAND AUTISM COMMUNITIES INTENDS TO BE A RESOURCE FOR INDIVIDUALS ACROSS THE SPECTRUM, BOTH LOW- AND HIGHFUNCTIONING PERSONS OF VARYING NEEDS AND INTERESTS.
Residents will be able to decorate and furnish their own space as they would like. Depending on whether a resident chooses a studio, one-bedroom, two-bedroom or three-bedroom apartment, there may be a need to compromise on the décor of common, shared areas such as the living room and kitchen. Long Island Autism Communities will have its own qualified personnel to provide oversight of residents and their staff on a 24-hour a day, seven days a week, 365 day a year basis. "That is an assurance we need to give the parents," said Massimo. "We also will be installing state-of-the-art smart security and communications technology so that we can monitor visitors and be responsive to our residents' parents and guardians should they need to reach us."
PERSON-CENTERED COMMUNITIES FOR ADULTS WITH AUTISM
Reflecting its vision, Long Island Autism Communities will be creating person-centered communities for adults with autism. In addition to the support of their own direct staff for those individuals who have direct staff, Long Island Autism Communities will be helping its residents access other resources meaningful to each individual and designed to enhance their lives. This could mean introducing them to a potential employer or nonprofit seeking volunteers, or connecting them with a resource providing therapeutic services for individuals with developmental disabilities.
Long Island Autism Communities also plans to host social events both within its community and at local parks, beaches, entertainment and cultural centers for its residents, as well as their parents, friends and neighbors in the surrounding areas. "We want our neighbors to know us and our residents to become fully-integrated and engaged with the local community," said Massimo. "It is our goal to have our residents known on a first name basis with the local retailers, restaurant owners, bankers, etc. to build a true sense of community."
"A LIFELONG PLAN"
Long Island Autism Communities is making a commitment to its residents by creating a sustainable housing model with the assurances they and their parents need. In addition to ensuring a resident's suitable placement within the community, the organization is committed to participating in a resident's Individualized Life Stage Planning, working in conjunction with their parents/guardians, direct autism staff and advisors to make sure they will be able to live in the community, safely and through a continuum of support for the rest of their lives. Long Island Autism Communities will provide access to fiscal intermediary services, where needed; partner with agencies to provide back-up of residents' own staff, should the need arise; attend support meetings with residents and their "circle of support" (i.e., family, friends and staff); and visit residents regularly to ensure their well-being.
FUNDRAISING DRIVE UNDERWAY
To date, Long Island Autism Communities has been building awareness through traditional and social media, town hall-type meetings, and two major fundraisers; a concert featuring Rock & Roll Hall of Famer Jorma Kaukonen of Jefferson Airplane and Hot Tuna, and a comedy special featuring Jeff Ross, The Roastmaster General. The organization also participated in two holiday shopping benefits on Long Island; the Americana's Champions for Charity and Mitchells of Huntington events. Additionally, funds are being raised through corporate partners including Amazon, Geico and Artisanal Premium Cheeses. With the first project identified, a major fundraising campaign will be launched in the first quarter of 2018 to help generate funds needed for operating the first community. Considering how pervasive this developmental disability is with 1 in 68 children in the U.S. diagnosed with an Autism Spectrum Disorder (Source: CDC), and the critical shortage of housing for adults with autism, Long Island Autism Communities is optimistic that the business community along with families touched by autism and others, will get behind its mission.•
ABOUT THE AUTHOR: Donna M. Autuori is Secretary of the Board of Directors of Long Island Autism Communities. In her professional career, she is President of Autuori Corporate Communications, Inc., a 23-year old public relations and marketing firm serving a client base of national and global businesses. She also helps build awareness for regional nonprofits including those serving individuals with development disabilities such as Pal-O-Mine Equestrian and Life's WORC on Long Island, NY.
