January 20, 2021
Dear President Biden,
We would like to reaffirm our June 17, 2020 letter to your campaign:
Your campaign’s new disability policy makes us hopeful about the future for our autistic children with high-support needs. Thank you for taking the Americans With Disabilities Act (ADA), disability rights, inclusion, and quality of life issues seriously, and also for addressing how the COVID-19 pandemic impacts the disability community.
Many of our children are already adults, and many require full-time supports, which means we share your campaign’s concerns. We also want to emphasize areas in which the campaign can deepen and reaffirm its commitment to disabled people of all ages, and do the most good:
1. Ensuring Community Living and Self-Determination For All
The COVID-19 pandemic, with its increased mortality rate for group home, state operated developmental centers, and intermediate care facility residents with intellectual and developmental disabilities including autism, is underscoring the very real dangers our children and their community members face when they are placed in congregate housing settings with insufficient supports and underpaid staff. We appreciate that your platform is dedicated to Long Term Services and Supports and Money Follows the Person.
However, as many of our children will always need 1:1, 24/7 supports, and these supports are often only offered in congregate settings—which tend to sacrifice our children’s rights to privacy and autonomy—we want to reiterate the necessity of your campaign’s dedication to the spirit of Olmstead. We are very concerned that a few vocal parent-led groups seek to use HCBS funds for housing arrangements that are nominally community-based or “intentional,” but functionally institutional. We appreciate your campaign’s clear dedication to Olmstead and ask that you prioritize ensuring that people with the most significant disabilities have equal access to truly integrated community housing with robust services, rather than the limited, largely congregate options they typically have now.
We would urge the Biden campaign to dedicate significant resources to ensure supported decision making options are a viable alternative to guardianship for everyone. By supporting our children’s autonomy—however that looks for each individual—paired with your commitment to using Home and Community Based Services (HCBS) options for quality housing supports in the truly most integrated settings, you can help our children with high support needs not only lead happier and more fulfilled lives—whether they live with us, with roommates, or independently—but keep them alive. And the best way to do this is by consulting disability and policy experts who either have or are informed by those with lived experience.
2. Better Autism Diagnostic Tools
Research has consistently demonstrated that autistic people have always been part of our families and communities, and that if anything are under-diagnosed. We need more and better diagnostic supports and tools, with effective reach into families of color, with lower incomes, and that consider the variety of autistic presentations if we are to effectively address this matter. This will not only provide an underpinning for improved quality of life, but will feed directly into your campaign’s goal of addressing racial inequalities in special education.
3. Disability Inclusion on Disability Policy
We are heartened by your commitment to creating a senior position in the White House dedicated to disability community engagement and policy coordination, and to recruiting people with disabilities in general.
Thinking Person’s Guide to Autism is fully committed to autistic and disabled inclusion: Some of us are disabled, and some are not, but we have all learned from disability wisdom and advocacy about how to help our children live the kinds of joyful lives they deserve, and secure the rights they need—and appreciate that you understand and will aggressively pursue a similar path to best policy practices.
As one of us recently wrote in the Washington Post, “Having a disabled child is not particularly rare,” and it is reassuring to see the Biden campaign clearly shares those values, and that your disability plan was developed in consultation with disabled leaders. We encourage you to keep listening to a diverse group of disabled experts. This is how effective disability policy is made.
Shannon Des Roches Rosa, Carol Greenburg, and Jennifer Byde Myers
Editors, Thinking Person’s Guide to Autism