By Nicole LeBlanc, Chairperson for the 2024 Capitol Hill Developmental Disabilities Resource Fair
Hello Everyone , My name is Nicole LeBlanc. I’m on the autism spectrum and a survivor of Low Expectation Syndrome. I’ve worked in the disability field for over 16 years.
This year, the theme of Developmental Disability Awareness Month (DDAM) is “A World Of Opportunities.” As America’s largest minority group, the disability community is becoming more visible and growing rapidly in size due to Long COVID, which is common in people with autism, ADD, ADHD, and neurodivergent populations. Long COVID gave me PTSD, TMJ issues, and chronic gut, thyroid, and metabolomic ailments that cost me over $10,000+ across the last 3+ years to treat with functional medicine. Congress must deal with the impact of Long COVID in our society, especially among neurodivergent populations. We are Not Disposable.
While many elected officials credit the hard-fought advocacy and protests from the disability community for saving Medicaid and the Affordable Care Act, many urgent disability specific issues remain unaddressed. Examples of these include institutional bias in Medicaid and long waiting list for community services that result in people being stuck in institutions. It is imperative that Congress initiates changes in disability rights law, such as ending the institutional bias in Medicaid, making Home and Community-Based Services (HCBS) an entitlement, and requiring states to determine eligibility based on function. When it comes to HCBS eligibility, we must eliminate the requirement of a maximum score of 70 in IQ and the need to be at risk of Institutional Care. There are many people with autism who fall through the cracks and don’t receive HCBS supports due to crisis-driven priorities and IQ limits. As someone currently on the autism spectrum, having HCBS support would make it easier to deal with my chronic ailments. It is time for us to stop putting mild, moderate, and significant disabilities against each other when making policy decisions about who should and should not get services.
Another big issue for the disability community is the Direct Support Workforce crisis that is causing massive amounts of turnover, trauma and disruption in the lives of people with disabilities who should be able to to live in their communities and achieve their American dream like everyone else. One way we can address this crisis is by passing progressive immigration reform, which will encourage immigration to solve workforce shortages as the U.S. population ages. Progressive immigration reform can stimulate the economy and end labor shortages.
As advocates, we are tired of being told that these issues might be important enough for a hearing “next year.” We have so much farther to go in achieving the dream of True Community Inclusion! Now more than ever, we need people with disabilities representing us in all branches and levels of government. The COVID-19 pandemic has demonstrated how ableism and medical models of disability are being used in our society to separate and divide us from the rest of the world. It makes me feel like the world is abandoning its commitment to truly include and accept people with disabilities and ending systemic ableism in our society!
I dream of a world free of ableism, racism and ageism. We must address poverty by eliminating asset limits and earnings caps in Medicaid supplemental security income (SSI) treating social security disability insurance (SSDI) and SSI as Universal Basic Income, and facilitating Supplemental Nutrition Assistance Programs (SNAP) for people with disabilities.
As George H.W. Bush said 30 years ago upon signing the ADA, “Let the shameful wall of exclusion finally come tumbling down.” Policymakers must listen to the voices of people with disabilities who are impacted by their policies. I call on Congress to invest $400 Billion in HCBS to end waitlists and the DSP crisis, pass the HEADS UP Act to Declare People with I/DD a Medically Under-Served Population, and Declare Long-COVID a national emergency. The HEADS UP Act would classify people with I/DD as a medically under-served population and pay doctors more to care for us, student loan forgiveness and longer appointment times to name a few.
Sincerely,
Nicole LeBlanc, Chairperson
2024 Capitol Hill Developmental Disabilities Resource Fair
Disability, Social Justice A
