This Land was Made for My Son with a Disability, Too
The Fourth of July is a time of reflection of our nation’s past and present. As a mom to a child with a disability and former history teacher, I often marvel at how far our nation has come in one generation as it relate to the human rights of individuals with disabilities.
Surely, when Thomas Jefferson wrote we have the right to “life, liberty and pursuit of happiness” in the Declaration of Independence he wasn’t thinking of people like my son who has Down syndrome. Still, this document and our nation’s constitution has been used as proof that my son deserves a life of choice and self-determination with needed supports.
When I was born in 1982, individuals with Down syndrome had a life expectancy of 25-years-old. Many still lived in neglected and abusive institutions, were denied life saving surgeries, and underwent forced sterilizations as approved by the Supreme Court in 1927.
One generation later, in 2012, when my son was born life expectancy more than doubled to 60-years-old. Many laws contributed to this amazing feat including Medicaid (especially the community and home-based waivers program), the Americans with Disabilities Act (ADA), and Individuals with Disabilities Education Act (IDEA).
Troy (left), with his twin, Hunter
Still, forward progress has often been an evolution, rather than a revolution of inclusion for people with disabilities. At times like now, there seems to even be a back-pedaling of progress. With threats seeming to come from every direction, it’s hard not to lose heart. It’s also hard to know where to focus your energy. You’ve likely heard that advocacy is a marathon, not a sprint. Check out some of the issues facing our community below, and pick up the phone, write an email, or give a speech. Small acts from us all can lead to big change and forward progress.
Inclusion in schools for Students with Intellectual Disabilities: federal reports show that only 15% of students with intellectual disabilities are included in general education for the majority of their day. The Supreme Court of the United States, in the Endrew F. case, demanded a higher expectations for our students with disabilities, but some schools are still segregating them. Join this Facebook group that is teaching parents how to address their local school board to advocate for inclusion in general education (click here).
Achieving a Better Life Experience (ABLE) Act: This law allows people with developmental disabilities to save above the $2,000 a month threshold without jeopardizing their government benefits. Still, disability advocates say more people need to open ABLE accounts or the program will be in jeopardy. That’s why advocates are asking people to urge their Congressmen to pass the ABLE Age Adjustment Act to increase the age of disability onset. Find out more here.
Medicaid Cuts: You might remember last summer’s fight for Medicaid. That fight is not over. A 2019 Budget proposal by House Republican hopes to cut critical disability supports. Disability advocates are hoping the proposed budget will likely not include these cuts, but there not taking any chances. Find out how you can prevent its passage here.
Troy playing baseball with his typical peers.
In a time of growing distrust of government, you need to know that the federal government has made a huge positive impact on the lives of our nation’s most vulnerable citizens. My son is proof of this progress. At 5-years-old he can do everything his neuro-typical twin brother can do. He’s potty trained just like his typical twin, can read and sound out simple sentences like most kids his age, and plays on the same tee-ball team as his typical peers.
It’s important not become complacent. Let’s fight to continue the progress made by so many.
To read more from Courtney Hansen, you can visit her web-page at Inclusion Evolution.