Why FEN should support the Disability Integration Act

You may not have heard of the Disability Integration Act of 2019, but it is worth the support of the Final Exit Network (FEN) and the individual support of all people who favor a self-controlled death.

The Disability Integration Act addresses the fundamental issue that people who need Long Term Services and Supports are often forced into institutions and lose their basic civil rights as a result.  The purpose of the legislation is to end the bias toward institutionalizing older adults and the disabled in favor of providing a choice of home and community-based services.

If older adults and the disabled have greater choice in where they live and receive needed services, there is evidence that they will overwhelmingly choose home and community-based services.  An analysis by a group of gerontologists included the following:

With an aging U.S. population, finding the optimal setting for long-term care is an issue many older Americans and their families must confront. Nine million older Americans were estimated to have needed long-term care in 2012, and the number is projected to increase 33% by 2020 to 12 million (U.S. Department of Health and Human Services, 2012). In the United States, Medicaid is the primary means for financing long-term care services, and traditionally, most spending is on institutional care (Doty, 2000; Health Policy Institute, 2007). Policymakers in the future must not only increase overall capacity of long-term care systems but also address the issue of resource allocation to provide long-term care in other settings than nursing homes.

For some adults, nursing home care is unavoidable, but many older adults prefer to remain in the community as long as possible. Driven by the U.S. Supreme Court’s Olmstead decision, recent federal legislation, including the Deficit Reduction Act of 2005 and the Affordable Care Act of 2010, has attempted to reduce states’ institutional bias for long-term care and permit more individuals to remain or transition to the community.  (Citations omitted.)

A congressional analysis explains that this bill will prohibit government entities and insurance providers from denying community-based services to individuals with disabilities who require long-term service or support.  It will permit older adults and the disabled (which includes many, if not most, older adults) to live in the community and lead more independent lives than they might in institutional care (i.e., nursing homes).

The bill prohibits discrimination against such individuals in the provision of community-based services through the imposition of eligibility criteria, cost caps, or waiting lists, or failing to provide a specific community-based service.  Also, home and community-based services must be offered to individuals with such disabilities before they are institutionalized; and, if they are institutionalized, they must be notified regularly of community-based alternatives.

The Center for Disability Rights explains the Disability Integration Act:

1.  It would require both public and private insurances that cover any kind of long term care to give equal coverage to home and community support services, so you could simply choose that option if it’s what you want.

2.  It would require this in every state, so no matter where you live, your right to independence would be the same.

3.  It would, in effect, add teeth to the Supreme Court’s Olmstead decision, which first set out the principle that these services aren’t just benefits, they are the practical embodiment of the right to independence for people with significant disabilities.

It is not surprising that disability activists, such as Not Dead Yet and ADAPT, are strong supporters of this bill.  They have always worked for greater access to home and community-based services for the disabled.  In addition, they see greater access to home and community-based services as helping older adults and the disabled avoid the self-controlled death laws that have been passed in nine US jurisdictions (Oregon, Washington, Vermont, District of Columbia, Colorado, California, Hawaii, New Jersey, and Maine).

The main reason they believe that greater access to home and community-based services will reduce use of such laws is the reporting from Oregon that many older adults chose Oregon’s right-to-die (RTD) law for the last twenty years because of  “loss of autonomy” (90.6%), “less able to engage in activities” (89.1%), “loss of dignity” (74.4%), “losing control of bodily functions” (44.3%), and “burden on others” (44.8%)–all as reported by the doctors who wrote the lethal prescriptions, not as reported by the patients who took the drugs.  Anita Cameron of Not Dead Yet believes that the Disability Integration Act will reduce the number of older Americans and the disabled who use RTD laws, but that remains to be seen.  

The Disability Integration Act may have less of an impact on the use of RTD laws than Cameron supposes.  For the first twenty years the Oregon law was in effect, the majority of participants were enrolled in hospice (90.2%) and over three-fourths (75.9%) were dying of cancer, two reasons most dying people who use RTD laws may not be much affected by the Disability Integration Act if it becomes law.  If they receive home and community-based services at the time they are considered terminal, there may be no reason for them to move into an institution, many of which would not cooperate with or allow use of a RTD law if one were in force in their state.  They would be likely to die at home with home and community-based services.

If the Disability Integration Act would make life more bearable and cause older adults or the disabled to want to continue to live, that is a choice with which FEN and those of us who follow its ethos support.  Whether to live or have a self-controlled death should always be the sole decision of each individual.  If that decision can be made without the external influences of inadequate housing or poor quality of care, everyone in the RTD movement should see the Disability Integration Act as a worthwhile law.

In the Senate, the Disability Integration Act of 2019 (S.117) is sponsored by Charles Schumer (D-NY), has 27 co-sponsors, and has been referred to the Committee on Health, Education, Labor, and Pensions.  Its members are:

REPUBLICANS BY RANK

• Lamar Alexander (TN)–Chair
• Michael B. Enzi (WY)
• Richard Burr (NC)
• Johnny Isakson (GA)
• Rand Paul (KY)
• Susan Collins (ME)
• Bill Cassidy, M.D. (LA)
• Pat Roberts (KS)
• Lisa Murkowski (AK)
• Tim Scott (SC)
• Mitt Romney (UT)
• Mike Braun (IN)

DEMOCRATS BY RANK

• Patty Murray (WA)
• Bernie Sanders (VT)
• Robert P. Casey, Jr (PA)
• Tammy Baldwin (WI)
• Christopher S. Murphy (CT)
• Elizabeth Warren (MA)
• Tim Kaine (VA)
• Maggie  Hassan (NH)
• Tina Smith (MN)
• Doug Jones (AL)
• Jacky Rosen (NV)

In the House, an identical bill, H.B. 555, is sponsored by Rep. James Sensenbrenner (R-WI), has 232 co-sponsors (only 218 votes are required for legislation to pass the House), and has been referred to two committees in the House: the Energy and Commerce Committee and the Judiciary Committee, where its Subcommittee on the Constitution, Civil Rights, and Civil Liberties is responsible for reviewing the bill.

The Chair of the Subcommittee is Steve Cohen (D-TN), Vice Chair is Jamie Raskin (D-Maryland), joined by Democrats Eric Swalwell (CA), Mary Gay Scanlon (PA), Madeleine Green (PA), Sylvia R. Garcia (TX), Veronica Escobar (TX), and Sheila Jackson Lee (TX).  Republican Subcommittee members are Mike Johnson (LA), Louie Gohmert (TX), Jim Jordan (OH), Guy Reschenthaler (PA), Ben Cline (VA), and Kelly Armstrong (SD).

According to staff members of the committees and subcommittee, no actions have been scheduled on the bill, which means that those in favor of the bills should make their position known to committee and subcommittee members, as well as the sponsors and cosponsors of the bills, and your local representative and senators.  Phone calls are quick and easy, but emails or letters can work just as well, maybe better–use the live links provided.  The important thing to do is to act if you want to make your views known about this legislation.  A handful of calls or emails or letters to the office of a senator or representative is often all it takes to get their attention.