June 3, 2020
Dear Vice President Biden,
The National Council on Severe Autism (NCSA) read with interest the Biden campaign’s disability policy statement. We appreciate the campaign’s attention to the needs of disabled Americans.
NCSA is a voice for the disabled who have no voice — specifically, the growing population of Americans disabled by severe forms of autism.
Severe autism is rapidly developing into one of our country’s greatest public health and public policy challenges — data suggests that at least 1% of all U.S. children now suffer from substantially disabling autism, in addition to another 1% who have the disability of autism but are considered higher functioning. California data show a 40-fold increase in cases of severe autism over the past 30 years (from 3,000 cases to 126,000 cases in the state today), an alarming fact mirroring trends across the country.
Those with severe autism often have minimal language, low cognitive ability, severe functional impairments, and dangerous behaviors, including aggression, self-injury and property destruction. They typically need 24/7 care, for life, having little capacity to care for themselves or earn a living. Almost always they are found eligible for disability-based Supplemental Security Income as adults. The explosion in this population is overwhelming an outdated care system utterly unprepared to meet its extensive, intensive needs.
Though it was perhaps unintentional, the campaign’s disability agenda seems to exclude the urgent needs of the severe autism and intellectual disability population. We are writing to ask that the campaign be inclusive of this constituency and their families, and offer a few examples.
1. Guardianship. Individuals with significant intellectual disabilities and who lack the cognitive capacity to make informed decisions, including those with severe autism, need strong legal protections and advocates who will act in their best interests. Guardianship is a key protection for those who are most vulnerable to abuse, abandonment and exploitation. While guardianship should never be used to supplant the desires of people with disabilities who have the good fortune to have mental capacity, those without such capacity require strong legal representation and protection.
2. Residential and Vocational Settings. NCSA believes all long-term supports, vocational opportunities, and housing decisions and funding must be person-centered, that is, based on specific individual needs, and not on any arbitrary one-size-fits-all policy. Medicaid funding should be applied based on person-centered plans, period.
It should go without saying that a person-centered approach must include disability-supportive settings for those with intensive needs that cannot be served in the general community. For example, one cannot expect that an autistic young man who screams for 10 hours a day could live peacefully in an apartment complex, or that a young nonverbal aggressive woman who needs continuous supervision should be locked up with an aide inside a low-income studio unit, without access to specialty care or supervision to prevent physical and sexual abuse.
As Together for Choice has explained, the clear fact is that many individuals with autism and intellectual disabilities require a higher standard of care, a fact recognized by the majority in the Olmstead decision. The federal and state government should focus on quality of programs and housing and whether they serve person-centered goals, not arbitrary metrics like size, type or location, metrics which only serve to de-fund programs appropriate for our most severely disabled citizens. The individual, not the government, should guide choice of HCBS setting, and the crucial option of the intermediate care facility for the developmentally disabled (ICF/DD). All viable options must be respected and preserved, particularly as the severe autism population continues to surge, far outstripping system capacity.
3. Special Wages Under Section 14(c) of the Fair Labor Standards Act. NCSA has written extensively about the need to retain non-competitive employment for those with severe disabilities who are incapable of engaging in competitive jobs. Work programs offering non-competitive employment such as 14(c) provide a critical option for many with cognitive disabilities. They provide purpose, community engagement, supervision, training, and friendship. Eliminating Section 14(c) would leave men and women with significant intellectual disabilities without jobs and cherished programs, a tragic compounding of our already overwhelming, unprecedented services crisis.
We are grateful to see the Biden campaign encompass such an urgent issue as disability policy. We do hope that going forward the needs of those with severe intellectual disability and autism will figure more prominently. We are happy to discuss these matters with you and your staff at your convenience.
With gratitude for your commitment to all disabled Americans,
/s/
Jill Escher
President