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The Disability Integration Act of 2019: Saving Independence

Aging oftentimes leads to the need for assistance. Elders in our communities face the difficult decision whether it is time to seek out a long-term care (LTC) facility for maintaining health and safety. But, what if LTC facilities were not the only accessible option?

LTC facilities have been established to provide care services to those that need more than what they, or their families, can arrange. Deciding to transition into long-term care is a difficult one. Residents certainly relinquish many rights and conveniences that they have become accustomed to while living independently. LTC facilities are expensive and often families are left with few options on covering costs.

Some communities provide alternative services to afford individuals with the opportunity to remain in the community instead of entering LTC. Services such as meal preparation, housekeeping, medication management, and personal care services are some possible offerings in these areas. Not all states or counties provide these services – forcing seniors-in-need prematurely into LTC facilities. LTC is not only expensive for the residents, but for the insurance providers, like Medicaid, and the states that cover them.

The Disability Integration Act of 2019 (DIA)

Renewed interest in offering alternatives to LTC have recently developed within Congress. The Disability Integration Act of 2019 (DIA) was introduced in the Senate and House of Representatives on January 15, 2019. The bill has since been referred to the Senate’s Committee on Health, Education, Labor, and Pensions and the House’s subcommittee on the Constitution, Civil Rights, and Civil Justice. Prior similar efforts were not successful, but advocates hope to pass this law on the anniversary date of the Americans with Disabilities Act, July 26, of this year.

Purpose and Benefits of DIA

DIA will require insurance providers in all states to make in-home based services available as an alternative to institutionalization for disabled or elderly individuals. While it could be said that all residents in LTC may be disabled in some way, not all disabled individuals need long-term care. Some of these individuals may qualify for LTC because of various difficulties with Activities of Daily Living (ADL). ADLs include eating, toileting, grooming, dressing, bathing, and transferring. These limitations may restrict one’s ability to manage certain areas of their care, but it does not necessarily mean that entry into LTC is appropriate. Other factors leading towards eligibility for LTC are the need for help with Instrumental Activities of Daily Living (IADLs), including shopping, cooking, money management, and others.

An elder with diminished capacity due to disability may be able to accomplish most of the ADLs, but is unable to effectively handle IADLs on their own. The DIA may provide the assistance needed for such individuals to safely stay in the community, rather than face the often undesired entry into a LTC facility. The DIA will give elders and others with disabilities with the options for maintaining independence.  

In Olmstead v. L.C., 527 US 581 (1999), the United States Supreme Court found that segregating the disabled into LTC was a violation of the Americans with Disabilities Act.  The Court held that public entities must provide individuals with disabilities community-based services if those services were appropriate, the disabled person is agreeable to community-based services, and those services can be reasonably accommodated.  Furthering the inspiration behind the Olmstead case, the DIA will establish an intermediate route for individuals that will minimize limitations for these groups.  

Future Impacts of DIA

It is unimaginably difficult to make the decision to enter a loved one into LTC. Even more challenging is deciding how to proceed when your loved one is functional in some areas, but deficient in others. There is also difficulty when the family and the loved one disagree on the level of care needed going forward. The DIA may provide a reprieve for families, and those in need of care, facing these challenges.

Sec. 2.(a)(5) of the bill reminds us that, “[S]tates, with a few exceptions, continue to approach decisions regarding long-term services and supports from social welfare and budgetary perspectives, but for the promise of the ADA to be fully realized, States must approach these decisions from a civil rights perspective.” While potentially costly to implement at first, states could find huge savings in the long term, due to lower costs of providing in-home versus institutionalized care. Rather than Medicaid funded LTC costs, states would have the opportunity to provide less invasive care dependent upon an individual’s needs – not a predetermined base cost per resident. In-home care employment needs would rise and offset lesser need for care providers within formal care facilities.

In Sum

The Disability Integration Act of 2019 is a bill advocating for a universally implemented system of care services intended to keep elders and individuals with disabilities from prematurely entering LTC. States would be required to offer services to such individuals that allow them to maintain their status in the community through independently living. This is big news for those lost in the grey area between independence and LTC residency. Individuals eligible for LTC will have access to services that may prolong their independent status. The DIA has great potential to make an enormous difference in the lives of elders and disabled individuals in our communities.


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