The media and the medical community often promote the wonders of a healthy, active lifestyle at any age. And even though the "golden years" may bring some physical changes, most people - young and old - may have come to expect they will live long, healthy lives. Consequently, when you or someone you love is faced with a disabling illness or injury, you may be taken by surprise. Having to deal with a disability is not something most people anticipate.
When people realize that a disability — their own or a loved one's — is going to be permanent, they may express a variety of reactions from shock to fear to grief to anger. There is no "right" way to respond. People generally react according to what the disability means to them and just how much it is going to affect or change their lives. Generally speaking, those who accept and make adjustments for their new reality will have an easier time coping. If you've developed a disability, acknowledge your limitations, but concentrate on what you can do and how you can adapt to do even more. Set realistic goals, and approach life as a challenge, not an effort.
A disability often requires changes in how a person lives, works, travels or spends free time. If you've developed a disability, you may need physical or occupational therapy. You may also have to make adjustments to your daily routine. Perhaps you have to find a new living arrangement or change jobs or hobbies. Maybe you need to make structural changes to your home. An occupational therapist can help you with these changes. If your doctor agrees, ask him or her to recommend one.
Keep in mind that community services and household help may make the difference that enables you to continue living at home. Examples of help that's available are:
- Housecleaning or yard services to help with chores
- Grocery delivery or meal services
- A home health aide to assist with personal grooming
- A visiting nurse to administer medications and monitor health
There are also products available to help with daily living activities. For more information, contact: ABLEDATA, 8401 Colesville Road, Ste. 200, Silver Spring, MD 20910; Phone: 800/227-0216; www.abledata.com
ABLEDATA is a federally funded project that provides information on assistive technology and rehabilitation equipment. Information specialists are available to provide specific information about a particular device, manufacturer or distributor of the 25,000 assistive technology products listed in their database.
If your home requires major structural changes or remodeling, you can contact the following organizations for information. Keep in mind that specific questions need to be addressed by legal, medical and rehabilitation professionals who can address the issues that may be unique to your city, town or state.
Adaptive Environments Center, Inc.
U.S. Dept. of Housing/Urban Development (HUD)
24-hour housing counseling referral line: 800/569-4287
U.S. Access Board
Phone (voice): (202) 272-0080 toll free: (800) 872-2253
Phone (TTY): (202) 272-0082 toll free: (800) 993-2822
If you can no longer manage in your own home, you may have to consider a new living arrangement. Medical and social service professionals can offer advice on whether you need skilled or non-skilled daily care and what type of environment (assisted living, rehabilitation, continuing care facility) may be best for you. They may also be able to provide recommendations on specific living facilities.
Before making such an important decision, you may wish to discuss the options with family and friends. Ask them to help you check out several facilities by researching and then visiting them. At each facility, ask to see the results of the latest state inspection. This is public information, and facilities are required to post it. Also, the local health department can tell you whether the home has ever received an Intent to Deny License because of sanitary or fire violations or patient care inadequacies. For a list of accredited facilities, contact the American Health Care Association at (202) 842-4444. The American Health Care Association (AHCA) is a non-profit federation of affiliated state health organizations, together representing more than 10,000 non-profit and for-profit assisted living, nursing facility, developmentally-disabled, and subacute care providers that care for more than 1.5 million elderly and disabled individuals nationally.
Many people with disabilities are able to continue to work and support themselves. Often, simple accommodations in the workplace are all that is needed. You may require a flexible work schedule or special equipment to help you perform your job. Talk to your employer about specific problems, or seek advice from an occupational therapist. If you are unable to continue in your present job, a vocational rehabilitation counselor may be able to help arrange training and other services to help you prepare for an alternative line of work. Each state has a vocational rehabilitation agency (and some states have separate agencies for persons who are blind) to provide these services. These agencies typically have a number of local offices in each state. Contact the Employment Supports section of the President's Committee on Employment of Persons with Disabilities at www.dol.gov/odep. This is not a placement service but a toll-free consulting service that provides information about job accommodations and the employability of people with disabilities.
Disability Income Insurance
Sometimes a disability prevents a person from working at all. If you are fortunate enough to have disability income insurance, it can help to make up for lost wages. Some employers provide disability income insurance as a benefit, or you can purchase a private policy. Disability income insurance is designed to replace a portion of your income when an illness or injury prevents you from working. Talk to your benefits representative at work or your insurance representative about specific disability coverages.
If your disability is due to illness or injury resulting from your job, you may be eligible for worker's compensation. Again, talk to your benefits representative.
If you're under age 65 and your earnings are lost or reduced because of certain disabilities, you may be eligible for Supplemental Security Income (SSI). SSI generally makes monthly payments to people who are aged, disabled or blind and who have limited income and resources. You may be eligible for SSI even if you have never worked. To determine your eligibility, contact your local Social Security office or the Security Administration www.ssa.gov.
Medicare and Medicaid are two of the primary sources of federal medical assistance for people with disabilities. Most people think of Medicare as providing health coverage to those who are over age 65. But it is also available to people under age 65 who have been entitled to receive Social Security disability benefits for a total of 24 months or who have severe kidney disease. The program is not based on income and is available regardless of financial need.
Medicaid is a joint federal and state program that provides health services to people with low incomes. The eligibility requirements vary by state. Generally, you may be eligible for Medicaid if you are receiving welfare benefits or SSI or are blind or disabled.
For more information about Medicare and Medicaid visit www.medicare.com.
A federal law, Section 504 of the Rehabilitation Act of 1973, prohibits discrimination against otherwise qualified individuals with disabilities in programs and activities conducted or funded by the federal government. These activities include housing, education and transportation. Section 504 requires the provision of "reasonable accommodations" to allow persons with disabilities to participate in the federally conducted or assisted activities.
Americans with Disabilities Act (ADA)
The ADA was enacted in 1990 to protect people with disabilities. This federal law generally forbids discrimination in employment, transportation, public accommodations, telecommunications and services provided by state and local governments. The U.S. Department of Education supports regional technical assistance centers to provide information about the ADA and its implementation. These centers may be reached toll free at 1-800-514-0301. Your call will be automatically routed to the center in your area. Generally, the protection provided by the ADA extends to:
- Those who have a physical or mental impairment that limits one or more major life activities (working, learning, walking, seeing, speaking).
- Those who once had a disability but no longer have it (for example, cancer or heart disease).
- Those who are perceived as having a disability, even if they do not (for example, someone with severe facial scarring from burns).
- Those who do not have a disability but are discriminated against because they are associated with someone who does (for example, the spouse of a person who has emphysema or the parent of someone with AIDS).
When you're around someone who has a disability, be relaxed and talk about mutual interests. It's okay to talk about the disability if it comes up, but don't pry. Some other helpful hints include:
- Always address the person first, not the disability. For example, say "a person with a disability" instead of "a disabled person." Likewise, say "people who are blind" rather than "the blind," and avoid old-fashioned terms such as afflicted, crippled or lame.
- Speak directly to someone who is hearing impaired, rather than to an assistant. Don't shout, but speak clearly and slowly and remember that facial expressions and gestures are important.
- Be patient if the person needs extra time to do or say something.
- If the person uses a wheelchair, sit down to talk so you're at the same level.
- Listen carefully and patiently to a person with a speech impairment. Avoid speaking for the person, and try to ask questions that require short answers.
- Don't touch a guide dog or a wheelchair or crutches used by the person unless you're asked to do so.
- Offer help if asked or if the need seems obvious, but don't insist.
Some Advice for Family and Friends
Those who are close to someone with a disability may experience many of the same feelings their loved ones have: anger, frustration, fear, sorrow and even guilt.
If you are part of the day-to-day life of a person who has a disability, your emotional as well as physical support can be an invaluable source of strength. Here are some ways to help:
- Come together with other family members; don't let the situation divide you. While you may all react differently to a disability, the cooperation of everyone will make for a smoother transition.
- Learn the facts about the person's disability. Knowing what to expect can help prepare you for future challenges.
- Know how and when to help. Respect the person's feelings. Ask a person who uses a wheelchair if he or she would like assistance before you start pushing.
- Foster self-esteem. Be positive and encourage independence, to the extent possible. Help your loved one look for new ways to achieve his or her goals.
- Look for help. Find out about local support groups and community services that can help both the person with the disability and the caregiver.
Millions of Americans have some type of disability, and many more — their families and friends — are also touched by the challenges of dealing with disability. While a disability may be a fact of life, it should not be the focus of a person's existence. The key to coping is knowing what resources are out there and finding the people, programs and organizations that can help you. Take control of your life now, and seek the help you need to live life to the fullest.
Don't Call Me Special: A First Look at Disability
by Pat Thomas
Publisher: Barron's Educational Series
The Road Ahead: Transition to Adult Life for Persons with Disabilities
by Keith, Ed. Storey
Publisher: Training Resource Network, Inc.
Nolo's Guide to Social Security Disability: Getting & Keeping Your Benefits
by David A. Morton
Publisher: NOLO, 3rd edition
This Life Advice topic provides information that will help evaluate the need for disability insurance and learn about the types of disability coverage. It also offers tips about shopping for disability insurance coverage. For Information on Special Needs Estate Planning, call 1-877-638-3375.
If you're a veteran with a disability, contact your nearest Department of Veterans Affairs field office.
National Rehabilitation Information Center (NARIC) features 60,000 disability-related records in five databases that include: literature, organizations, the most current information, and the latest research.
Disability Resources is a non-profit organization that monitors, reviews and reports information about resources for independent living.
National Dissemination Center for Children with Disabilities (NICHCY) serves as a central source of information on disabilities in infants, toddlers, children, and youth; IDEA, which is the law authorizing special education; No Child Left Behind (as it relates to children with disabilities); and research-based information on effective educational practices.
Social Security Disability Claims provides a large amount of information and access to immediate claim representation for Social Security Disability SSDI and SSI Disability claims.