This article is written by Dr. Stephanie Meredith, the Development Director at Genetic Support Foundation and the Supervisor of our Lettercase National Center for Prenatal and Postnatal Resources. She is also the mother of a young man with Down syndrome and has worked in disability advocacy for nearly 25 years.
The past two weeks have been heartbreaking for me both as the mother of a 25-year-old with Down syndrome and as a professional who serves people with genetic conditions, many of whom rely on federal programs like Medicaid and Supplemental Security Income (SSI). The vast majority of people born with intellectual disabilities and/or people who are medically fragile depend on Medicaid for healthcare, as well as for services like nursing and support staff, employment support, medical supplies, and nursing facilities. These individuals often also often rely on SSI, which provides a maximum monthly stipend of $967 to pay for all of their living expenses: housing, clothing, food, and recreation. And if you work, like my son does, this amount gets reduced by 50 cents for every $1 he earns. Please imagine trying to live on less than $1,000 per month. It is simply not possible to live on this income without significant support from others, particularly for individuals who rely on additional medical and social support.
This morning, I learned from parent advocacy organizations nationwide that House Republicans have threatened to cut $2.3 trillion dollars in Medicaid funding. Our family needs our Medicaid waiver to pay the wages of our son’s support staff who takes him to exercise, teaches him to live independently by cooking and doing laundry, and takes him to his paid and volunteer work throughout the day. Some adults with disabilities need that money to pay rent, and I have friends who rely on life-saving and very expensive medicines like seizure medications for their children. Medicaid is essential for many reasons. It provides the funding my son needs for healthcare (because the vast majority of adults with Down syndrome and other intellectual disabilities cannot get healthcare any other way), as well as the cost of his support staff who make it possible for him to have a full life.
In the 19th and 20th centuries, all the money for people with disabilities was sent to institutions, where the conditions were horrendous. People were packed into rooms in the nude, forced to live in their own filth, and even subjected to experiments including being given chocolate milk with Hepatitis-infected feces to test the Hepatitis vaccine. Parents began rejecting this model of institutionalization in the 1960s and 70s when these cruel conditions were exposed, but they needed support to raise their kids at home. Even though I am incredibly proud of my son, he requires more help and therefore has more expenses than a typical 25-year-old. He needs support with transportation, cooking for himself, monitoring money and medical issues, and getting proper exercise to live a healthy and long life. We have a whole team who support him between myself, my husband, my mom, my daughters, and our wonderful paid staff. I spend at least an hour every Sunday planning who is going to do everything so that my son is able to go to his job at a grocery store, coach lacrosse, work on his photography business, and go to church activities. Without our network of support, my son would not be able to have rich social interactions and make tremendous contributions to his communities.
It feels demeaning to him and our family to have to spell all this out, because we have a happy life, and I do not want people to feel sorry for us or him. But the fact is that we need our Medicaid funds for medical care and support staff to make our happy, fulfilling life possible. For many, including our family, it is frustratingly difficult to even get a Medicaid waiver, and people languish on waiting lists for years before getting approval. In our case, we were on the waiting list for 17 years!.
And there are people who have much more significant needs than we do. My dad’s cousin has an intellectual disability and relies on Medicaid funds to cover the cost of his host home. There, he receives 24-hour care to help with everything from basic hygiene to personal care. He is 65, his parents died long ago, and I’m the only family member that helps with this care outside of his host home. If he gets stripped of his funds, he has no resources to help himself. For my son, these funds determine quality of life, but for some of our other friends and loved ones, these funds determine whether they live or die. And once these funds get stripped from us, it’s almost impossible to get them back.
While the new administration clarified last Monday that Medicaid was not the target of the funding freeze, many advocates like myself feel like the motivation for the clarification was the many calls we all made to our legislators and the White House. However, cutting Medicaid remains a priority for the House in this upcoming session, but the one beam of hope is that it appears advocacy worked. If you want to take action to protect your patients and loved ones who rely on government funding, please contact your US legislators about the importance of preserving Medicaid and SSI (calling them only takes two minutes, and I have provided instructions below). You may feel helpless during these times, but our voices can ripple into huge effects. When Medicaid cuts were proposed in 2017, it was one senator, John McCain, who made all the difference in saving Medicaid at the eleventh hour.
How to Contact Your Legislators
1.) If needed, identify your House and Senate representatives.
2.) Call the Capitol Switchboard at (202) 224-3121 and ask to be connected to your representative to say the following:
I’m calling to express my genuine concern about preserving funding for Medicaid and SSI. I have patients [and friends/family members/loved ones] with disabilities who rely on SSI and Medicaid to cover the cost of their support staff, healthcare, and extra expenses. Without these funds, these children, adults, and families are at-risk of a financial and health crisis. The lives and financial security of your people are literally on the line, and we need you to support Medicaid and SSI.
3.) Set up an in-person appointment with your legislator at their district or state office.
4.) Attend Advocacy Days at your state capitol alongside your patients. Find them by connecting with your state’s developmental disabilities council.
Learn More
For more information, click below to watch a webinar from The Arc and learn about the growing concern of potential cuts to Medicaid, including what you can do this year to help protect Medicaid.