I have had a fairly average life. I attended public school, recently earned my bachelor’s degree and enjoy traveling and spending time with my friends. I’m one of the lucky ones because I live with my family and essentially do what I want with the people I choose. What would happen though, if my parents suddenly could not care for me? Or in the future, when my parents just cannot do everything I need all the time? The short answer is, I would probably be placed in a nursing home. Too many individuals who cannot live without varying degrees of support are faced with this issue every day. When the supports an individual needs are not available or provided, in a community-based setting, people are forced into institutions. However, should the Disability Integration Act (DIA) pass and be instituted as law, it would keep situations like this from occurring.
What DIA is and Current Status
The Disability Integration Act of 2017 seeks to strengthen the Americans with Disabilities Act by addressing the lack of Community-Based Long-Term Services and Supports (LTSS) which forces individuals who need certain assistance into institutions. The DIA would make it illegal for organizations and insurance companies to discriminate against individuals who choose community-based care support options and would outlaw cost and service caps. It also requires organizations and insurance providers to provide adequate payment for individuals providing LTSS to ensure it is a viable career. The legislation mandates that all options for community-based living be explained to individuals in institutional settings and those at risk of institutional placement and that they must be given the option to remain in the community. Lastly, it calls for an increase in affordable and accessible housing to make these other goals a reality.
Currently, the Act has over 130 national organization supporters including the American Association of Retired Persons, American Civil Liberties Union, Human Rights Campaign, Paralyzed Veterans of America and the National LGBTQ Task Force Action Fund. Numerous state and local agencies across the country have also pledged their support of the act. The House of Representatives version of the bill (H.R. 2472) was introduced by Republican representative F. James Sensenbrenner of Wisconsin and currently has 79 Democratic and 10 Republican co-sponsors. Democratic minority leader Senator Charles Schumer introduced it in the Senate (S.910) and it now has 18 Democratic co-sponsors and one independent party sponsor.
Importance and Reasons to Support DIA
The Disability Integration Act ensures individuals constitutionally-protected right to liberty by preventing them from being forced into costly institutional settings due to lack of adequate community-based care. When individuals need assistance with activities such as personal hygiene, household chores, transportation and financial decisions, they are often placed in nursing homes because community-based supports are either denied or not available. Most, if not all, individuals who get put in nursing homes or other institutions could live independently with community supports if given the opportunity. In a report by the Health, Education, Labor, and Pensions Senate Committee, members state that the right to participate as a full citizen of the country is a protected civil right under the Americans with Disabilities Act. When individuals are placed in institutions they are unable to fully participate in society and have autonomy.
Further, institutionalizing an individual costs substantially more than providing home and community supports to the same individual. Thirty-eight studies published between 2005 and 2012 prove that providing home and community-based care is less costly than providing institutional care, often by tens of thousands of dollars. By saving money that would otherwise go towards the costs of institutionalization, states can reinvest and help even more people or fund other programs. Community supports on an individualized basis will also create jobs which spurs the economy. Lastly, individuals who can live in the community are more likely to be able to hold jobs and be more self-sufficient. Keeping individuals in nursing homes or group houses only entrenches dependency on government assistance.
What you can do
If you believe everyone deserves their unalienable rights to life, liberty and the pursuit of happiness, please support this effort. If your representative and senators have not yet supported the Disability Integration Act, write to them and urge them to do so. Tell about your personal experiences with institutional living, whether it’s about yourself or a family member. If you are interested in being a community support person, check with your local disability and aging organizations for volunteer and job opportunities. Everyone wants and deserves to, live in freedom.
Erin Vallely lives with a rare form of muscular dystrophy and is a proud wheelchair user. Having graduated with a B.A. in Sociology and Anthropology with a Spanish minor from Wells College in Aurora, NY, she plans to pursue a career in disability rights advocacy and public policy. In her spare time, Erin enjoys reading about other people’s experiences, supporting other minority groups, and traveling.