This article is part three of a four-part series.
In this 4-part series, Focus for Health is examining the explosion of special education needs in schools secondary to the significant rise in the prevalence of developmental disabilities, including autism and mental health disorders. With budget cuts forcing schools to eliminate programs and staff, schools are hard-pressed to address the many needs of classified students without having a negative impact on regular education students. These needs can only be met with adequate funding on federal, state and local levels in order for school districts to meet the requirements of Individuals with Disabilities Education Act (IDEA).
If the prevalence of special needs and chronic health issues continues on its current trajectory, this system is sure to burst. And the financial needs of these individuals do not end when they receive a high school diploma or age out of the system at 21.
In Part 3, FFH looks deeply into the options for individuals who have aged out of IDEA, which only mandates services be provided until age 21. So what happens next?
Classified students are entitled to transition planning beginning by age 16 (in most states). Transition plans lay the foundation to prepare students for life beyond school, with goals that consider a student’s strengths, needs, and interests. For some, it will prepare them for employment and independent living, but for others, this will not be possible. For those young adults needing more support, federal and state-funded programs exist to assist with transportation, supportive employment arrangements, therapy services, and housing.
On paper, it all sounds wonderful. In truth, funding shortages prohibit many from receiving the necessary supports they need, including appropriate housing. And equally disheartening, people with disabilities are 50% less likely to be employed.
In May, 2017, The Bureau of Labor Statistics reported only 27% of 25-64 year olds with disabilities, compared to 77% of those without, were employed. Even more disturbing, 70% of those with disabilities were not in the labor force (actively seeking employment) at all, compared to 19% of those without a disability. The data also reflected a generally lower level of employment for persons with disabilities within each level of educational attainment. Over 14 million individuals between 25-64 years of age reported at least one disability in 2015. Who pays for the unemployed? The US government.
Individuals with disabilities who want to work are entitled to supported employment services to help find and sustain a job. These services are determined by the individual’s strengths and deficits and can help with resume writing, interview preparation, and on-site job coaching. Who pays for this? The US government.
In 2012, The Bureau of Labor Statistics showed half of all persons with a disability who were not working reported some type of barrier to employment. Reported barriers included lack of education or training, lack of transportation, the need for special features at the job, and a person’s own disability. Over half of individuals with a disability who were employed reported having some difficulty completing their work duties because of their disability. The National Longitudinal Transition Study (NLTS 2012) released data showing only 58% of young adults ages 20-25 with ASD who had been in special education in secondary school had ever worked during their early 20’s; 63.9% received Supplemental Security Income (SSI) benefits; and less than 1 in 5 had ever lived independently away from their parents and without supervision.
Where have all the boys gone?
The National Academy of Social Insurance data shows in 1982, around 1.9% of working-age men were receiving disability benefits. By 2012, that number had risen to 3.1%. Historically, the workforce as well as college enrollment had been dominated by men. Numerous studies show this gap has closed, in fact, according to data in a Wayward Sons report; women born in 1975 were 17% more likely to attend college and 23% more likely to complete a 4-year degree as compared to their male counterparts.
Perhaps one of the most influential businessmen of all time, Jamie Dimon, CEO, JP Morgan Chase & Co, was recently interviewed by MarketWatch regarding the shortage of men in the workplace today. Referring to The Bureau of Labor Statistics report showing the share of men ages 25-54 considered to be part of the labor force had declined from 97% to 88% in just a half a century, Dimon commented, “That’s not demographics, folks. That’s a huge number. There’s something wrong.” According to the Wayward Sons authors “simple shifts in occupational structure are insufficient to explain the puzzle of declining real wages of non-college males in the U.S. during the last three decades. In reality, there is no single, widely accepted explanation for this phenomenon.”
What Jamie Dimon and the authors of the Wayward Sons report might not know are the studies showing that autism is nearly 5 times more prevalent in boys than girls. In fact, the recently released data in the National Health Interview Survey shows during 2014–2016, the prevalence of children diagnosed with autism spectrum disorder was higher among boys than girls by 2.38%. Moreover, the NLTS 2012 study showed youth with ASD, when compared to students receiving special education services, were 84% more likely to be male.
Could the millions of men missing from the labor force over the past 50 years also be related to the prevalence of autism increasing from 1 in 10,000 to 1 in 36?
Housing options for individuals with developmental disabilities (I/DD) are varied and determined by level of assistance needed, affordability, and availability.
So why is there a national housing crisis for people with disabilities?
Firstly, the affordability gap prohibits many individuals with I/DD from owning or renting a home. In 2016, there were approximately 4.9 million non-institutionalized Americans with disabilities relying on Social Security Income (SSI) averaging $763 per month. With the average rent for a one-bedroom apartment costing $861 per month, people who rely solely on SSI can’t afford a home without assistance. According to a 2016 report by The Technical Assistance Collaborative and The Consortium for Citizens with Disabilities, in four states — New Hampshire, New Jersey, Rhode Island, and Vermont — and the District of Columbia, one-bedroom rents exceeded 100% of SSI in every single housing market area. Over 163,000 people with disabilities receiving SSI lived in these areas.
Various rental assistance vouchers are available for eligible persons to limit rental expenses to 30% of his/her income. Who subsidizes the other 70 percent? The US government.
Consequently, when funding shortages or budget cuts decrease the availability of voucher assistance, the individual is placed on a waiting list. Currently, in New Jersey, over 4,500 individuals with special needs are on the Division of Developmental Disabilities’ (DDD) housing waiting list.
The Division of Developmental Disabilities within the Department of Human Services is the primary agency providing support services allowing individuals with disabilities to strive to find living arrangements that encourage independence and community living. Medicaid, a jointly funded federal and state government social health care program for individuals and families with low income, provides funding through the Medicaid Community Supports Waiver or the Supports Program. These Medicaid waivers provide funding for support services for eligible individuals so they can remain in their family home, live in residential settings such as licensed community residences, live in independent homes, or supervised apartments. However, services are only offered when the resources are available, and to no surprise, most waivers have a waiting list. And, to the dismay of many, this push to enforce community living prohibits housing units being dedicated to those solely with developmental disabilities where individuals with similar needs can live together and receive necessary supports because it is not considered to be inclusive.
According to the ARC for People with Developmental and Intellectual Disabilities, over 850,000 people in the US with I/DD live with an aging caregiver (age 60 and older). Due to the shortage of housing and support services, many adult children with I/DD are at risk of institutionalization or homelessness when their aging parents can no longer care for them. The financial burden of institutionalization at the cost of $187-$2,715 per person per day, and 350,923 homeless individuals also falls upon the US government.
The Transition Cliff Dive
Autism rates are up 23% since 2014, according to the latest statistics published in the National Health Institute Survey. Mental health disorders, autism, and chronic health issues are depleting school budgets nationwide. With IDEA not being fully funded, covering only 16%, of the 40% maximum federal contribution of the state average per pupil expenditure in 2014, states and local school districts are forced to make up the difference. If IDEA was fully funded in 2014, the costs would have amounted to $28.65 billion which is nearly $17 billion more than what the feds actually contributed towards IDEA. With only 36% of youth with ASD having participated in postsecondary education between high school and their early 20’s, meaningful and gainful employment is limited. For those unable to work, day programs have waiting lists and housing shortages are forcing aging parents to care for their adult children.
What will happen when those parents are gone? The lifelong financial burdens of those with disabilities on their families and every citizen in the US, is leading to a definitive public health crisis. It is not a question of “how,” but “when.”
In Part 4, FFH will explore the many theories behind the genetic and environmental influences that may be contributing to the rise in childhood chronic illnesses and neurodevelopmental disabilities.