Darrell Jones
Darrell Jones, interim executive director at National Council on Independent Living, Washington, DC. NCIL.org
Just thinking about it can be devastating. What if you—or a loved one—sustain a catastrophic injury or experience an illness that makes you unable to return to the workforce? Besides having to adjust to your new capabilities, there’s a mountain of other considerations—How will I accomplish daily tasks? Will I have to move? Do I need a different mode of transportation? How will I pay my medical bills? Will my family member have to quit his/her job to take care of me?
But there is help, says Darrell Jones of the National Council on Independent Living (NCIL). There are a host of programs available to people with disabilities, but finding your way through them can be confusing, especially for someone still coming to terms with new limitations. Here are some ways to get started on that journey…
Reach out to people who understand what you’re going through. One of the most helpful resources is the Center for Independent Living (CIL). This is not a place to live but a resource center that provides information, referrals, advocacy, life-skills training and peer support. CILs are available in hundreds of cities and towns across the US. They empower individuals with disabilities to exercise their freedom of choice. You will find other people with disabilities who have learned how to manage day-to-day life.
The CIL staff will know the systems you have to deal with and can help you navigate them. Examples: They can help you find resources to make modifications to your home…avoid placement in a nursing facility or help you relocate to a community if you now live in a nursing home…access the financial benefits you are entitled to…even find a church group that builds wheelchair ramps or a community organization that offers accessible recreational opportunities. The CIL knows the ins and outs of your area as well as your state and the federal government. To find the CIL nearest to you: Use the directory at ILRU.org, or contact the NCIL at 844.778.7961 or ncil@ncil.org.
Check out other resources. Adjusting your life to your new disability can be full of uncertainty. It’s natural that you’ll begin to question your identity. Your family and friends may begin to see you differently, which can hurt. If you can no longer do the same work, it will take some time to come to terms with your changed abilities. Consider…
A mental health counselor may help you deal with the emotions that could affect your decision-making and quality of life. Check with the local CIL to see if it has a list of recommended mental health professionals.
Organizations that represent people with specific disabilities, such as United Spinal Association (UnitedSpinal.org)…The National Federation of the Blind (NFB.org)…National Association of the Deaf (nad.org)…and American Stroke Association (Stroke.org), may be helpful. For other disabilities, do a web search for support groups in your area or call the United Way (UnitedWay.org).
If there’s no CIL or similar organization in your area, seek information from churches, the public library or the firehouse. Even in remote areas, resources may exist, but you’ll need someone to help you find them.
Employment. Many people who become disabled assume that their working days are over. And for some, that may be true…but for others, it’s a matter of redefining what work might look like. Maybe you won’t be able to do your old job or perhaps even work in the same field, but there could be work that you can do and find fulfilling.
Vocational Rehabilitation (VR) programs. Every state has a VR program that can connect you with assistive technologies, retraining, job placement and other forms of support to get you working again. Find contact information for your state’s Rehabilitation Services Administration at RSA.ed.gov/about/states.
The Social Security Administration (SSA.gov) offers two programs for people with disabilities who would like to return to work—the Plan to Achieve Self-Support (PASS)…and Ticket to Work, which help recipients save up for the tools and equipment they need to re-enter the workforce.
Financial benefits. Disability can be financially draining. Besides possibly losing your own income, your spouse may have to stop working to care for you. Medical bills can be astronomical. Durable medical equipment is expensive, as are home and vehicle modifications.
The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities who meet certain medical criteria.
Social Security Disability Insurance (SSDI) pays benefits to you and certain members of your family if you worked long enough before your disability and paid Social Security taxes. Eligibility is based on your work history and whether you have a disability that meets Social Security’s definition. Generally, you are entitled to benefits if you cannot work for one year or more because of a disability.
Supplemental Security Income (SSI) is geared specifically toward people with limited financial means. It has maximum-income thresholds for eligibility.
Depending on your circumstances, you may be eligible for SSDI and SSI at the same time.
If you’re denied coverage, the CIL can guide you on how to appeal or put you in touch with people who can help. You also can perform a web search for “Disability Advocates” in your area.
Temporary financial assistance. Depending on your case, it can take a year or more to be approved and receive Social Security benefits. To fill the gap, many people apply for Temporary Assistance for Needy Families (TANF), which is federally funded but administered through the individual states. To apply, visit your state’s welfare agency. Once your Social Security kicks in, you’ll be dropped from TANF.
Medical insurance. If you’re already insured, you’ll want to find out what benefits you’re owed by your insurance company. If you’re having trouble securing the benefits that you believe are your due, contact your local CIL or your state’s insurance department. There’s a searchable listing of these departments on the website of the National Association of Insurance Commissioners (NAIC.org).
Medicaid might be the best option for securing health-care coverage. If you’ve been approved for SSI, you may get Medicaid coverage automatically, depending on which state you live in. In some states, you’re automatically enrolled…in others, you’re automatically qualified but still must apply…and in a handful of states, you’re neither automatically enrolled nor automatically eligible but most likely will qualify. If you need Medicaid but don’t get SSI, you can apply at HealthCare.gov/medicaid-chip.
Medicare Part A is available to people under 65 if they have certain qualifying disabilities, and those individuals may then be eligible for Part B. For more information, visit Medicare.gov.
Housing. One of the primary goals of the NCIL is expanding options for accessible, affordable housing that enables disabled people to stay out of institutions and live in the homes of their choice. You can reach out to your local CIL for guidance—it can connect you with federal, state, county and local housing-assistance programs.
US Department of Housing and Urban Development (HUD) offers subsidized rental assistance for disabled people under Section 811 of the National Affordable Housing Act. Non-Elderly Disabled (NED) Housing Choice Vouchers (HCVs) help people secure housing in the private market. To find out what options are available, check the HUD website for a directory to help you contact your local housing authority.
Food. The federal Supplemental Nutritional Assistance Program (SNAP) is the key resource for obtaining help with food. SNAP has special eligibility rules for disabled people. Generally, if you receive Social Security disability benefits, you’re eligible for SNAP, but you still must apply via your state agency, which you can contact at your local SNAP office.
Transportation. Depending on the state and where you live, you may be eligible for non-emergency medical transportation services. Both Social Security and Medicaid provide for free transportation to and from doctors’ appointments. Local communities often have paratransit services with free or reduced fares for disabled people. To find out what transportation options are available in your community, check in with your county transportation department or Human Services office.
