On this joyous inauguration day, we're republishing our Letter to President Biden @POTUS on Disability Policy, with renewed enthusiasm and hope for how the Biden Administration can best serve its autistic and disabled constituents.
thinkingautismguide.com/2020/06/a-lett…
#neurodiversity 1/
thinkingautismguide.com/2020/06/a-lett…
#neurodiversity 1/
Your disability policy makes us hopeful about the future for our autistic children with high-support needs. Thank you for taking the ADA, disability rights, inclusion, and QoL issues seriously, and also for addressing how the COVID-19 pandemic impacts the disability community. 2/
Many of our children are already adults, and many require full-time supports, which means we share your concerns. We also want to emphasize areas in which the Biden Administration can deepen and reaffirm its commitment to disabled people of all ages, and do the most good. 3/
1) Ensuring Community Living & Self-Determination For All
The #COVID19 pandemic, with its increased mortality rate for group home residents with I/DD, is underscoring the dangers our community members face in congregate settings with insufficient supports and underpaid staff. 4/
The #COVID19 pandemic, with its increased mortality rate for group home residents with I/DD, is underscoring the dangers our community members face in congregate settings with insufficient supports and underpaid staff. 4/
As many of our children & their community members will always need 1:1, 24/7 supports—often only offered in congregate settings at odds with residents' rights to privacy/autonomy—we want to reiterate the necessity of your administration's dedication to the spirit of Olmstead. 5/
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. (Such Betsy DeVos-style, connected-but-inexpert policy making needs to be shunned.) 6/
We appreciate your clear dedication to Olmstead, & ask that you prioritize people with the most significant disabilities having equal access to truly integrated community housing with robust services, rather than the limited, largely congregate options they typically have now. 7/
We would urge the Biden Administration 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… 8/
…paired with your commitment to using HCBS options for quality housing supports in the truly most integrated settings, you can help PWD with high support needs lead happier and more fulfilled lives—whether they live with us, roommates, or independently—plus keep them alive. 9/
And the best way to follow best disability policy practices is by consulting disability and policy experts who either have lived experience, or are informed by those with lived experience.
#NothingAboutUsWithoutUs, basically.
10/
#NothingAboutUsWithoutUs, basically.
10/
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. 11/
Research has consistently demonstrated that autistic people have always been part of our families and communities, and that if anything are under-diagnosed. 11/
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. 12/
Having better autism diagnostic tools will not only provide an underpinning for improved autistic quality of life, but will feed directly into the Biden Administration's goal of addressing racial inequalities in special education. 13/
3. Disability Inclusion on Disability Policy:
We are heartened by President Biden's 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. 14/
We are heartened by President Biden's 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. 14/
We at TPGA are 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, & secure the rights they need. 15/
We appreciate that President Biden and VP Harris understand and will aggressively pursue a path to best disability policy practices.
As one of our editors recently wrote in the @washingtonpost, “Having a disabled child is not particularly rare”:
washingtonpost.com/lifestyle/2019… 16/
As one of our editors recently wrote in the @washingtonpost, “Having a disabled child is not particularly rare”:
washingtonpost.com/lifestyle/2019… 16/
…it is reassuring to see that President Biden @POTUS clearly shares our values, and consults on disability policy with disabled leaders. We encourage him to keep listening to a diverse group of disabled experts. This is how effective disability policy is made. Thank you. 17/17
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