By Guest Blogger Eli Gelardin, Executive Director, Marin Center for Independent Living
My earliest memories of disability did not come from my own experience with dwarfism and hearing loss, but through my grandfather, Irv, who experienced a massive stroke shortly after I was born. The stroke resulted in full paralysis on the left side of his body and my grandfather required full-time personal care thereafter. Like many Americans, he became disabled later in life.
My grandfather’s story is not unique; in fact, one of the significant challenges our country is facing today is that we are aging and consequently aging into disability. According to the U.S. Census Bureau American Community Survey, 70 percent of adults older than the age of 65 will need homecare supports in their lifetime. Since approximately 14 percent of our country’s population is older than 65, this means roughly 4.4 million Americans will need homecare in order to continue living independently in their communities.
My colleague, Alice Wong, wrote an excellent article published on Disability.gov’s blog, entitled “Consumer Directed Personal Care as a Human Right.” In her post, she describes the cost-effectiveness of personal care versus nursing home care and/or other medical institutions. As she notes, California spends three times more on nursing facility care ($32,406 per user) than home and community based services ($9,129 per user). She also discusses the value of consumer directed personal care programs like In-Home Support Services (IHSS) in California and describes the tremendous impact they have on keeping individuals with disabilities living and working in the community.
Unfortunately, there is still a gap in services for many people with disabilities, as not everyone has access to government care programs. To qualify for programs like In-Home Support Services, an individual must meet Medicaid eligibility criteria. Typically, this means having limited assets (less than $2,000 per individual) and a total income below Social Security’s Substantial Gainful Activity Level (currently $1,090).
While there are exceptions for individuals who are working and disabled to retain Medicaid eligibility like Social Security’s 1619B provision and California’s Working Disabled Program (allowing a California resident to earn up to 250 percent of the federal poverty level while receiving Medicaid), these programs typically apply to younger individuals with disabilities and not to older adults and retirees. As are result, millions of Americans who are aging into disability do not qualify for Medicaid and government-funded personal care.
Additionally, the cost of private home care is rising. According to Genworth Financial Inc., the median cost of private home health services is $20 an hour with a five-year annual growth rate of 1.32 percent each year. This would mean that someone, who has aged into disability, does not qualify for Medicaid and requires a minimum of 12 hours of care per day, could potentially rack up more than $2,000 a week in homecare costs. This is simply unaffordable for the majority of Americans.
So how do we as a country ensure that individuals who are aging into disability can continue living in their communities? Long-term Care Insurance and Long Term Disability Insurance are two options, but purchasing them in the private market can be expensive, and unfortunately, they do not cover most older adults who already have a disability. While there have been legislative attempts like the CLASS ACT to create universal long term care insurance programs, these efforts have failed to gain bi-partisan support and fizzled.
There is no silver bullet to address the long-term care crisis, but I believe we need to continue to search for innovative solutions. We need to develop affordable personal care options for all individuals with disabilities, including those who do not qualify for Medicaid services. We also must grow a highly skilled workforce of care providers, which will require an investment in training and educational resources. These needs can be met by aging and disability service providers, health plans and other community-based organizations.
In California, one option is using online personal care registries like the one developed by my organization, QuickMatch.org. Our online registry has allowed our small organization to reach a much broader spectrum of individuals who need affordable personal care services but do not qualify for Medicaid. Ultimately, this country must recognize the urgent need for a quality personal care infrastructure and invest in creating solutions.
In order to reach this goal, we must advocate. We need to share our stories. We have to educate our communities about the importance of quality personal care and how it is crucial to the long-term well-being of our family and friends. We need to talk about care providers and the economic and social value they bring to our community. And we must preserve personal care as a right of every individual regardless of age, race, ability or socio-economic status.
So let’s talk: how do we ensure that everyone has a right to affordable and high quality self-directed care? Leave a comment or tweet at @MarinCIL using the hashtag #selfdirectedcare to get the conversation started.
About the Guest Blogger
Eli Gelardin serves as the executive director of Marin Center for Independent Living (MCIL). Mr. Gelardin has more than a decade of experience working in disability services and advocacy. During his leadership at MCIL, the small grassroots organization has grown to an annual budget of approximately $900,000 with 11 staff members and serves more than 800 individuals with disabilities each year. In 2013, MCIL was recognized as a California Center of Excellence by its peers.
Mr. Gelardin also serves as the co-creator of QuickMatch.org, an innovative Web application that blends the high tech capacity of an online personal care registry with the high touch services of local nonprofit community-based organizations. QuickMatch.org was recently featured as a model for homecare innovation at the National Home and Community Based Services Conference in Washington, D.C.
Mr. Gelardin translates his personal experience as an individual with a disability into his professional roles. He currently serves as the Chair of the California State Independent Living Council (CA SILC), Chief Financial Officer of the Mission San Rafael Rotary Foundation and a board member of the California Foundation for Independent Living Centers (CFILC) and the World Institute on Disability (WID).
Mr. Gelardin lives in the Bay Area with his wife, Christina, and their two children. They are a multigenerational disabled and proud family.
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