Congress must pass the Disability Integration Act

October has marked Disability Employment Awareness month with an array of events highlighting concerns of the disability community. Even with these observances, one issue getting neglected is the political battle being fought by disability advocates to pass the Disability Integration Act (DIA), a bipartisan piece of civil rights legislation supporting the rights of people in need of long-term services and supports (LTSS) to live in their own homes rather than being placed into an institution. 

Long Term Services and Supports (LTSS) is assistant care provided to a person needing help with everyday activities, like getting out of bed, getting dressed or making meals. The DIA would provide a practical solution to the unjust and inefficient practices that channel people with disability into costly institutions simply because of needing help with such activities. 

As an occupational therapist for over 30 years, I know these tasks are fundamental to successfully living in one’s home, but sometimes call for only a little outside help. The DIA would require that Medicaid and private insurances offer equal opportunities to receive LTSS in a person’s home similar to what they would provide within an institution. This would eliminate the institutional bias that contributes to families having to choose institutionalizing their loved one or face the major financial burden of paying for this coverage out of pocket.

While many disability advocacy groups have made passage of the DIA their primary focus, all Americans, especially those households with a member from the baby boomer generation, ought to be concerned that this proposed legislation becomes law.  

According to the U.S. Census, by the year 2050 more than 84 million Americans will be over age 65, almost double today’s rate. That number reflects that baby boomers are enjoying a longer life expectancy, but recent research finds they also have an increased chance of living with poorer health or disability. 

Because of that, many will likely need LTTS. As few private insurances cover the costs of long-term care, this is becoming a leading cause of catastrophic expenses for families. When finances are unavailable, family caregivers often become primarily responsible for parent or spouses’ care. However, this current approach to long term care is neither a just or practical plan for attending to the inevitable certainty that the costs associated with future LTSS needs will be astronomical. 

Unfortunately, many people incorrectly believe that long-term assistant care services are covered by Medicare. This is because they are unaware of the differences between how our national insurance system attends to healthcare versus long-term care. Medicare covers acute hospitalization costs and basic healthcare for those over age 65 or persons with disability. But, Medicare doesn’t cover long-term care costs because they are considered assistance care rather than healthcare. As such, they fall under the coverage of Medicaid. 

Medicaid is provided in assisted living, skilled nursing homes, and in-home care and is a combined federal/state program, so each state’s coverage can be significantly different. However, despite past landmark rulings, such as Olmstead v L. C. ,which found state institutions illegally segregate those in need of LTSS by limiting provision of home or community options for these services, many states have been slow to provide the infrastructure to support deinstitutionalization. In fact, some of my research has found that states with reported high levels of disability prejudice direct less of their LTSS coverage to community-based services. If passed, the Disability Integration Act would require all states to guarantee the option to live at home and receive assistance care no matter where you call home. 

Not only is the DIA fair and just. It is also practical. Research unequivocally shows that institutionalized care for LTSS is less cost-effective than living in the community. There’s also proof that people with disability living in their own or family homes have higher levels of quality of life and community participation than those in other settings. 

Congress has had the DIA bill before it since January, but advocates have been informed that no movement will occur on this legislation despite being supported by 852 Civil and Human Rights, Faith Based, Justice Reform, housing, national, state and local organizations. 

Despite this unprecedented bipartisan support, Democratic House Leadership have yet to schedule a hearing on the bill after months languishing in committee with disability advocates being told little more than to be patient. This inaction may very well be the difference for this bill’s movement or its slow legislative death. 

This bill is in all Americans’ best interests. The projections of the increasing demands for LTSS suggest that even in the most optimistic scenario, the drain on families and Medicaid will increase significantly in the not-too-distant future. 

A national program that offers better and more cost-effective long-term services in the home, such as the Disability Integration Act, is the best solution. Americans should let Congress know they want a publicly-funded health care policy that allows families to stay together in their homes and communities. 

Laura VanPuymbrouck, Ph.D., is an assistant professor in the College of Health Sciences at Rush University, Chicago, in the Department of Occupational Therapy. She teaches on occupational therapy theory, health-care systems, and physical disability interventions and her research examines healthcare and health disparities of people with disability. She is also a Public Voices fellow with The OpEd Project.