The CDC lists disabilities under six classifications: mobility, cognitive, hearing, sight, self care and independent living. Independent living difficulty is classified as having a "serious difficulty doing errands alone, such as visiting a doctor's office". This classification recognizes that the ability to independently navigate the community is a key component of daily functioning.
This article addresses the following questions:
Why is independent living important?
What kind of independent living resources are available?
How can individuals with disabilities afford independent living?
How does independent living change lives?
Why is Independent Living Important?
Imagine sharing your personal space with strangers. Imagine losing the ability to make your own schedule or choose when to take meals. Imagine being an adult with a curfew. There's no space for your personal belongings so maybe you have them in storage somewhere. The majority of your income covers your stay, so you are afforded very few vacations from it.
Sadly, this is the reality for millions of Americans living in institutions. There are approximately 1.2 million residents in certified nursing homes across the US. About 1 million more reside in assisted living facilities.This number continues to grow, among the elderly, and also among younger people with disabilities. 16.2% of nursing home residents are under 65.
Independent living is a vital essential in maintaining positive mental health. The ability to exist autonomously in the world fosters a sense of dignity, and control over one's own life.
Managing your own life from your own place fosters confidence and self-esteem. When people are forced to move into institutions like skilled nursing facilities and assisted living homes, mental and physical health often deteriorate.
Many people with disabilities just need a little support to manage daily tasks outside of personal care or mobility. So where can they find this support so essential to breaking down barriers to living a fully independent life?
What kind of Independent Living Resources are Available?
Professional Care
People with disabilities can apply through health insurance for a personal care attendant. They can also apply for skilled home health nursing. The Centers for Medicare & Medicaid Services (CMS) maintains the Care Compare website, which allows you to search and compare Medicare-certified home health agencies by location.
But outside of agencies that meet these professional needs, what supports are available for people who struggle to live independently?
Companion Care
Companion care focuses on social and emotional support, such as providing conversation, engaging in activities, and assisting with light housekeeping. It's not the same as personal care, which involves hands-on help with daily living activities like bathing, dressing, and mobility assistance.
Insurance typically does not cover companion care, but some state's Medicaid programs have specific policies and programs that may provide coverage, such as long-term care insurance, certain Medicaid waiver programs. For veterans with disabilities, check out the VA's Medical Companion Program.
A care companion can accompany you to the store or doctor's office. They may be able to sit with you in the hospital, whereas personal caregivers are typically paid only when they are performing work in your home.
Ask your health insurance plan if you have coverage. Search for a local agency and inquire about rates.
Meal Assistance
For many individuals living with disabilities, preparing and cooking food can be a challenge that makes independent living difficult. Getting out to the store and shopping can be a challenge too.
Meals on Wheels delivers nutritious meals to individuals who live independently and face these challenges. You may be encouraged to contribute what you can afford based on ability to pay. Some Medicare Advantage plans offer Meals on Wheels. Depending on the local chapter and demand, there can be wait times for service. Find a provider in your area here.
Dialing 2-1-1 connects you to local services like Companion Care and Meals On Wheels.
Individuals who experience difficulty getting to the pharmacy can check with the local pharmacy for delivery options, or open an account at ExpressScripts or another pharmacy that offers home delivery.
Virtual Help
For some independent living needs, individuals with disabilities can access education that affords them the opportunity to become more independent without access to a care companion. STRIVE WorldWIDE provides virtual independent living skills courses for people with intellectual disabilities and autism, covering topics like money management, personal safety, and social skills.
How can Individuals with Disabilities Afford Independent Living?
Approximately 21% to 25% of Americans with disabilities live in poverty. 75% of Americans with disabilities are unemployed. For many of these individuals, institutions seem like the only option, not only because of care needs, but because housing is so unaffordable.
Individuals with disabilities can apply for federal and state programs like the Housing Choice Voucher Program (Section 8) and Section 811 Supportive Housing, or look for local income-based housing.
Section 8 provides a tenant-based voucher that can be used to rent an apartment in the private market. To qualify for Section 8, your household income must be below 50% of the median income for your area. Contact your local Public Housing Agency here. Section 8 waiting lists vary greatly in length. Apply soon and check back frequently.
Section 811 provides project-based, long-term rental assistance and supportive services in specific housing units for people with disabilities. Properties manage their own waiting lists, which also have wait times or can be closed. Connect with your state's Department of Economic Security for information about local eligibility requirements and available housing opportunities.
How does Independent Living Change Lives?
I asked this question of several individuals with disabilities who experienced time in institutions and recently managed to secure independent living.
“Getting my own place gave me back my identity,” says Collette, who has lived with MS for 12 years. Following a full decade in assisted living, she now uses a housing voucher combined with her disability check to rent her own apartment.
“I can come and go as I please, decorate however I want, and run around naked if I want to,” she laughs.
Like so many people with disabilities, she depends on attendant care and companion care to make independent living possible.
“It's great to have someone to lean on, literally and figuratively!”
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Additional Information
The content provided in this article is for informational purposes only and is not intended as a substitute for legal, medical, or other professional advice. While we strive to provide accurate and up-to-date resources, some information may become outdated or incomplete. Always consult with your provider about personal medical concerns.
