Last summer Autism Speaks conducted a survey of over 10,000 people from various socioeconomic and ethnic backgrounds, including over 400 individuals with autism, to explore the current state of housing and support for individuals with autism in the United States. The results show a clear need for more housing, services, and education for family members regarding planning for the future.
According to the survey, only one in four caregivers is currently saving money to fund future housing needs for a child with autism. For individuals with autism, expenses go far beyond the cost of room and board. Many adults with autism require around-the-clock care and supervision, a significant added expense. Finding qualified caregivers, along with the funds to pay them is a major concern for families. As one respondent, the mother of a 21 year-old, says,
“It’s more than just purchasing a home. it’s funding the people that supervise my son 24/7. Food, gas, electric, etc.”
Most states offer services for people with disabilities, but 76% of caregivers who responded to the survey indicated that their child was not currently on a waiting list. According to the Henry J. Kaiser Family Foundation, 300,000 individuals with developmental disabilities were on a Medicaid waiver waiting list for home and community-based services in 2011. Given the large number of respondents whose child is not on a waiting list, this indicates that the number of individuals seeking services in the coming decade is going to be a much higher number. The current system is going to be overwhelmed by the sheer numbers of individuals needing services in the coming years.
The lack of savings and preparation on the part of families indicates a need for education and transparency regarding available services and steps that must be taken to safeguard a child’s future. There is a great deal of emphasis on early intervention, which is appropriate, but many families focus all of their energy and resources on this, and only later come to realize that their adult child has needs they are not prepared to meet.
According to The National Housing and Residential Supports Survey Executive Summary,
“There is a housing crisis right now in the United States and changes must be made and options must be created to keep it from growing even more out of control. It is our hope that the numbers and information gathered from the National Housing and Residential Supports Survey will go a long way in demonstrating the overwhelming need for housing options and support services for the growing population of young adults and adults with autism.”
Clearly, there is work to do. Current support systems need to be expanded, and new options considered. Families need to be educated about the lifelong cost of caring for a child with autism, and offered strategies to prepare. As the next generation of children with autism reach adulthood, the pressure on the current support systems will become apparent.