Billion Strong A Global Disability Movement

Caregiving for Persons with Disabilities at the Hands of The Senate by Rosemary Musachio

In 1999, the Supreme Court alleviated the fears of persons with disabilities (PWDs) in Olmstead vs. LC.  The landmark decision states:

“Institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable of or unworthy of participating in community life… Confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.”

Wonderful!  We don’t have to worry about being forced into nursing homes because we have disabilities requiring assistance to perform daily activities.  We have the right to live, work, and enjoy life as persons without disabilities have.  This right resonates 100% with the Americans with Disabilities Act (ADA).

That precious right, however, requires funding to maintain our independence in the community.  Over 2.5 million Americans with disabilities and seniors are on Medicaid-based waiver programs, which allot funding to provide caregiving services.  Another 820,000 are on the waiting list for personal care assistance (PCA).  Currently, a Medicaid independent provider earns an average of $11.52 per hour, less than a fast-food employee earns.  That’s criminal considering the lives of other human beings are in the hands of the PCA’s who bathe, dress, feed, groom, toilet, and transport them.  Many caregivers also provide companionship and emotional support for their clients.

Providing personal care for another person is invaluable.  Medicaid caregivers’ incomes are not worthy of their service.  President Biden realized the dire need for more PCA funding when he announced the American Jobs Plan, which included $400 billion for home-and-community-based services (HCBS).  The Better Care Better Jobs Act, proposed by Democratic officials and recently passed by the House, would implement the HCBS funds to extend the PCA job market and increase caregivers’ wages.

a woman in yellow cardigan holding the man s arm

The Better Care Better Jobs Act would utilize the funds also to improve the quality of care with training and high standards.  Many home health agencies hire whoever works in their office as long as they pass the background check, TB test and pass an exam that the agency created, not the state.  Many agencies also don’t offer training, including shadowing where new hires follow more experienced caregivers while caring for clients.  These agencies cannot find the time or the human resources to train new aides.

President Biden originally proposed $400 billion to help resolve these issues.  Since The U.S. Congress, however, tragically begged to differ, Congress slashed the HCBS funding by 75% to $150 billion through several committee revisions.  Now President Biden is including the downgraded figure in his Better Care Better Job Act.  The diminished funds would help finance the same services but at a lesser level.  For instance, states may not be able to remove many individuals from the Waiver waiting lists or give caregivers much deserved raises.

The $150 billion package still is at risk, however, if the Senate doesn’t approve this amount.  This devastating action would jeopardize the independence of persons who are receiving or waiting for HCBS.  Many would be forced to live in care facilities, which costs more than living in the community.  According to SeniorLiving.org, HCBS is $3,813 per month for an individual’s care compared to about $7,000 at a nursing home.  Therefore, shunning HCBS would not save money.

Furthermore, a halt in HCS proposed funding would crush any hope of caregivers receiving raises or more opportunities created in the home health industry.  Although caregiver jobs are booming, the turnover rate is staggering.  Between 30% to 70% of health aides quit annually.  Just in Pennsylvania, the turnover rate is 60%.  Besides COVID fears, they are leaving their jobs because they don’t know how to care for clients with complex needs; hence, they lack training, as mentioned above.  Many caregivers also are burnt out, working overtime for more than 3 or 4 clients.  Additionally, they do not receive benefits, including healthcare insurance and pensions.  Caregivers deserve all this since they do vital work of providing needed care so other human beings can live well.

Families of HCBS recipients also would suffer.  Without funding for caregivers, family members would have to stop working to care for their loved ones.  Although Medicaid pays family members to be caregivers in many states, the wages are just as meager as non-related caregivers.  They may be forced to go on public assistance for their survival.

If the Senate is intelligent and compassionate enough to pass the Better Care Better Jobs Act, millions of Americans can continue to live independently within the community.  With its passage, 2.3 million caregivers may earn higher wages and benefits that they’ve long deserved.  If the act becomes law, the door of opportunity will swing wide open for others who want to show compassion and care to those who need it.  The U.S. Senate must not obstruct these benevolence.

About the Author

Rosemary Musachio is a frequent blogger and currently the Chief Accessibility Officer for Ruh Global Communications. Rosemary is available to offer corporate training and webinars on accessibility and awareness. She’s also certified as a CPACC. Rosemary, who was born with Cerebral Palsy, has many years of experience as a writer & poet, accessibility tester, auditor, trainer, and technologist. Besides E&IT Accessibility, she also advocates attitudinal accessibility, especially concerning women with disabilities and non-verbal patients.

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