Medicaid Cuts Will Endanger a Lifeline for Persons with Intellectual Disabilities’ Community Integration, Empowerment, and More

In the United States, more persons with intellectual disabilities are living in the community than ever before. This was not always the case. For centuries, state and federal policies funnelled health care, rehabilitation, and other essential services for persons with disabilities into large-scale, segregated “institutions.”

However, over the past several decades, that systemic bias has steadily eroded. While important improvements are still needed, in many ways disability rights advocates and their allies have flipped the script through a combination of strategic litigation, legislative advocacy, and grassroots mobilization.

One advocacy success is Medicaid home and community-based services (HCBS). Since 1983, HCBS have allowed states to use federal dollars to promote community integration by serving persons with intellectual disabilities in their own or shared homes. To illustrate: in 1987, about 9 of 10 persons with intellectual disabilities who received Medicaid-funded services lived in institutions. By 2017, the situation had reversed: 9 of 10 Medicaid recipients with intellectual disabilities lived in the community. And HCBS have become so popular that many states cannot keep up with demand, as evidenced by long waiting lists in certain states.

The U.S. Congress is currently considering expansive cuts to Medicaid that will jeopardize access to vital health care services for millions of disabled and older Americans.

However, these hard-won gains are now at risk. The U.S. Congress is currently considering expansive cuts to Medicaid that will jeopardize access to vital health care services for millions of disabled and older Americans. For persons with intellectual disabilities, these cuts threaten their access to personal care, in-home nursing, and durable medical equipment. Although certain elected officials have stated that the proposed cuts will not directly affect persons with disabilities, the reality is that if the federal government reduces Medicaid spending, then states will likely slash HCBS programs, as happened during the Great Recession. Understandably, disability rights advocates and their allies have sounded the alarm.

Indeed, our own research shows how HCBS positively impact the lives of persons with intellectual disabilities. (We are grateful to the Samuel Centre for Social Connectedness, without whose support this study would not be possible.) Our ongoing study, which is a collaboration between researchers with and without intellectual disabilities at Harvard Law School Project on Disability (HPOD) and the statewide self-advocacy organization, Massachusetts Advocates Standing Strong, has generated revealing insights into the experiences of HCBS recipients with intellectual disabilities in Massachusetts.

For many persons with intellectual disabilities, HCBS are passports to independent living. One study participant was able to move out of his mother’s house and into a group home he loves, despite his significant support needs. Without HCBS, his only option would have been an institutional setting. While grateful for all his mother’s support, he explained his desire to move out succinctly: “I think [my mom] holds me back a little bit too much sometimes.” He has also noticed a change in his relationship with her; now, “she lets me make my own choices.”

HCBS are just as much about personal empowerment as they are avoiding institutionalization. HCBS recipients with intellectual disabilities have a right not only to choose where to live, but also to choose which services they receive and how through a “person-centered planning process.” In this way, HCBS help not only to redefine the physical spaces where persons with intellectual disabilities belong, but also to reshape the attitudes of their family members and service providers.

For instance, another study participant recalled, “People spoke out for me and what I wanted. … I was afraid to speak up for myself.” Only after gaining experience with the HCBS planning process did he realize, “‘Hey, I’ve got to be the one to do the talking.’” He approached his father and said, “‘I need to speak and I need you to be there for just support.’” In retrospect, “back then I didn’t have all the courage to speak up like I do now.”

Of course, there are opportunities to strengthen HCBS programs — or, whatever remains of them following Congressional cuts — by making them more “person-centered.” For example, one prominent advocate with intellectual disability feels that his service “plan is more about what other people want” than what he wants for himself. For another, “it seems more important for workers to secure the document for the file”; instead, “person-centered planning needs to be more about us, about what we want, what we need.” Their experiences resemble those of too many of our study participants whose service planning teams resist participants’ aims rather than they collaborate towards achieving them.

Yet, when at their best, HCBS serve as a critical bulwark for civil rights, including by helping reverse court-ordered guardianships. For example, a third participant from our study was able to leverage the independence she has achieved with the support of HCBS to regain decision-making rights she had lost through a guardianship order. She recently successfully used her HCBS planning meetings to persuade her guardian to petition to restore her rights. Without HCBS, this participant might not have been able to convince the professionals and family members around her that she was capable of making her own decisions.

Depending on how Massachusetts responds to federal Medicaid cuts, our study participants will be at risk of losing supports and services they depend on to facilitate their community living and autonomy. Each one of the authors of this piece would also be personally affected — either as direct recipients or family members of HCBS recipients in Massachusetts. The consequences could include losing access to personal care assistants, funds for mobility equipment, therapies, medications, and the daily paid supports needed to stay safe and manage life’s basic tasks.

While the immediate effects of Medicaid cuts will be felt most acutely in the disability community, they will also ripple out and harm broad swaths of the public. Even as the disability community mobilizes to oppose these cuts, as well as other threats to federal special education, income, housing, and food programs, it will be vital to prepare for survival in a new, sparser service landscape. Moreover, as HPOD has done in the past, it will be critical for researchers and advocates, both with and without intellectual disabilities, to continue telling the stories of the effects of funding cuts and the human toll they will inevitably take.