As of 2020, there are a little over 8 million people nationwide living with intellectual/developmental disabilities (I/DD). Many of these adults and children rely on Home- and Community-Based Services (HCBS) to live in their communities. HCBS is almost fully supported by Medicaid and allows individuals with I/DD and other disabilities to receive person-centered care supporting their daily living activities, healthcare and wellness, and general support to live a full and independent life. The elephant in the room, H.R. 1, is threatening to take all of this away. As this bill is likely to pass the House of Representatives and be signed by the President in the next day or so, we need to remember that forthese individuals with disabilities, there are no alternatives. This bill threatens to leave millions homeless or banished to nursing homes and hospitals across the nation.
As a Registered Nurse and Medical Coordinator in the I/DD community, I am feeling the immense pressure millions are feeling with Medicaid cuts looming. Each step astonishingly has brought us closer to the terrifying unknown. With this reconciliation bill threatening Medicaid funding, those of us who serve this community are left wondering how we will survive should it pass. Most individuals in community-based living get by on bare bones means as it currently stands. Luckily, we are well known for our resourcefulness, as well as our abilities under pressure.
So what does H.R.1 actually say that threatens the futures of so many? It may be hard for the average reader to tackle a bill normally, and H.R.1 tries to do a good job of hiding the most detrimental proposed cuts as “minutiae.” One of the most potentially damaging parts maps out new work requirements for Medicaid eligibility, stringent enough to exile our community members. Individuals ages 19 to 64 who apply for Medicaid would need to perform qualifying work activities for 80 hours per month, a feat which is nearly impossible in our community. Another part of the bill proposes biannual eligibility revaluations with complicated paperwork and hoops to jump through. These also happen to be just a few examples of how federal cuts to Medicaid disproportionately affect disabled and our geriatric population for this reason.
Medicaid as the primary payer for HCBS is an up-front risk for these exact reasons. HCBS has already seen cuts that stem from various political fluctuations. and the program and its recipients cannot sustain much more. HCBS is often the first target when there are new budgetary cuts or restraints, yet they take up the greatest majority of the programs that Medicaid funds. Simply put, many officials who oversee the direction of federal money do not see the value of our individuals and community members, and it’s finally spelled out in a bill.
Medicaid reimbursement rates are already so low for those with I/DD that individuals with Medicaid as their sole source of support cannot currently receive the services that they need. What they are receiving barely covers the costs to house, feed, and care for these individuals, and further cuts would make the HCBS system inoperable.
Beyond work restrictions, Medicaid recipients are at risk of losing access to what some have deemed “optional services”: physical, occupational, and speech therapy, to name a few. These services are in no way optional for our community members, and some rely on them. Reduced access to or disruptions in therapies can cause major setbacks and medical complications for these recipients.
Beyond my role as the Medical Support Coordinator at Delta Community Supports, I am the mother of four children. My youngest receives Medicaid support due to his diagnosis of Emery-Dreifuss Muscular Dystrophy and his wheelchair dependence. Without the support of Medicaid secondary to his health insurance, we simply would not be able to properly care for him. His secondary services would become “unnecessary”, his supports dwindled down to what we as his parents can provide for him. The blatant disregard for his well-being is appalling; the apparent indifference to whether he or those like him live or die is downright disgusting.
In my case, fortunately, my son lives with me and we as his family care for him, but many families will feel an overwhelming increased burden caring for their loved ones. In the case of the individuals I work with who live in group homes, their future is much more grim. Some are without families, and those are the ones at the most risk. Those who are profoundly disabled in any direction are at the most risk. Anyone who depends on HCBS to live is at great risk. This is where we must band together, circle the wagons, and protect our most vulnerable or else they will become numbers and casualties.
AUCD Policy Talk 