From the Desk of the CEO
HOME HEALTH CARE IS A CIVIL RIGHTS ISSUE
Home health care is, for many people with disabilities, not an option. They require, for example, home health for their medical needs, to get them up and ready to go to work, or to simply stay out of the nursing home or other institution. For many, it is a quality of life issue, and for some people with disabilities, truly a life or death issue.
United States Senator Tom Harkin produced a report in July 2013, the Harkin Report, regarding the utilization of home and community-based services (HCBS). The conclusion: providing HCBS is less costly than providing institutional care. As the average cost of nursing home care in Nebraska is significantly higher than home health care, we believe cost savings through reducing home health care will not materialize and would be swamped by increases in future institutional or waiver expenses.
If the concern is with the balance of payments and costs of providing services to people with disabilities, we would suggest that other larger sections of the Medicaid budget be addressed first.
Disability Rights Nebraska considers home health care a civil rights issue.
According to the Nebraska 2013 Medicaid Annual Report, home health and Personal Assistance Services account for only 1.8% of the Medicaid and CHIP vendor payments for FY 2013, where nursing facilities account for 18% and full risk managed care accounts for 24.3%.
The Harkin report further outlines the national trend to rely on institutional care:
In reality, only 12 states spent more than 50 percent of Medicaid long-term services and supports (LTSS) dollars on home and community-based services (HCBS) by 2010. Further, the population of individuals with disabilities under 65 in nursing homes actually increased between 2008 and 2012. This is true even though 38 studies over the past seven years have clearly demonstrated that providing HCBS is more cost-effective than providing services in an institution. (emphasis added)
Beyond the cost estimates, home health care is also a civil rights issue.
In its 1999 decision in Olmstead v. L.C. that unjustified institutionalization of people with disabilities is a form of unlawful discrimination under the Americans with Disabilities Act (ADA). The decision reflects a preference to serve people with disabilities in their homes or communities rather than in institutions.
As the Harkin Report summarizes:
- The Olmstead decision clearly articulates that ensuring individuals with disabilities are able to exercise their right to participate as citizens of the state and the country is a protected civil right under the ADA. Olmstead envisioned that states will provide appropriate long-term services and supports (LTSS) to individuals with disabilities through home and community-based services (HCBS) and end forced segregation in institutions.
- Previous testimony before the Committee illustrates the discriminatory nature of institutionalization. One individual stated simply: “People need to have high expectations for people with disabilities because then they’ll give them opportunities to learn and grow. People don’t grow in…institutions.” (emphasis added)
Moreover, the Harkin Report clearly prescribes a potential solution to the continuous back-and-forth between policymakers in the legislative and executive branches. Finding a solution requires a different philosophical approach and the development of an enforceable and accountable Olmstead plan.
“The result of the survey demonstrates that, with a few exceptions, state leaders continue to approach decisions regarding Medicaid from a social welfare and budgetary perspective. For the promise of Olmstead to be fully realized, state leaders must also approach decisions about Medicaid delivery options from a civil rights perspective. To do so, states must create an Olmstead plan with enforceable benchmark targets — one that fully evaluates whether a state can take advantage of new federal options to better ensure that individuals can live in community-based settings where they can fully participate and be granted the power of individual decision making and choice.” (emphasis added)
Nebraska must develop an Olmstead plan and assure that it is enforceable.
WHAT ARE THE OPTIONS TO FUND HOME HEALTH SERVICES?
The Affordable Care Act provides a series of programs designed to increase the utilization of home and community-based services such as:
- Funding for The Community First Choice (CFC) Program, which gives states an increased six (6) percent federal Medicaid match for providing community-based attendant supports as an alternative to institutional services.
- Funding for The Balancing Incentives Program, which gives a higher federal Medicaid match to heavily institutionalized states who shift to community-based services as an alternative to institutions.
- Enhancing Funding for Aging and Disability Resource Centers, which are designed to assist seniors and people with disabilities in a variety of tasks, including choosing among long-term care options.
- Funding to maintain and expand the Money Follows the Person (MFP) Program through 2016. Under this program Medicaid funds that supported an individual to live in a nursing facility can now “follow” the person and support the provision of long term services in their home.
- Expanding the scope of the Community Living Initiative and opportunities available to states to promote and support community living for people with disabilities. This expanded role deepens the focus on the relationship between home and community-based services and accessible, affordable medical services.
We have an opportunity with the assistance of the Affordable Care Act to secure a better future for Nebraskans. What we need is an effort to determine what works for Nebraska.
Consumer-Directed Personal Care as a Human Right
To me, [in home support] is the embodiment of the disability rights movement—the belief that people with disabilities aren’t patients, but rather the experts of their own care, that they deserve to have control over every aspect of their life despite the severity of their functional limitations. Interdependence and being part of a larger community is my definition of independent living. I may be ‘dependent’ on others for my survival, but I also contribute to society as a whole.
- Alice Wong, Member, National Council on Disability