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Appropriate quality health care is essential for all Americans, but for people with disabilities, it can mean the difference between living independently in the community or living in an institutional setting. In today’s medical world, however, it can be difficult to get what you need in a timely manner. It becomes even more difficult when you are not feeling well. Services can be fragmented, and there can be long delays between initial request and final delivery. Getting what you need to manage your disability can, however, mean the difference between living independently or not being able to live independently. Getting what you need can cover services, a doctor’s visit, durable medical equipment, supplies, and prescriptions. Staying ahead of the game is desired, but it is not always easy to anticipate or possible to achieve. Unexpected needs and delays just have a way of popping up out of the blue.
Many of you may already have experience with getting
your health care needs met in today’s complicated medical
world. Some of you may still be struggling to get what you need.
You will learn that you are your biggest advocate for getting what
you need and for getting things done.
You need to trust yourself and be persistent. Don’t settle
if you have an unmet need because you could put your health and
your life in jeopardy. Follow up if things seem to be moving slowly.
This is often easier said than done. Be forward looking. Anticipate,
as much as you can, your equipment/supply needs. Know your rights
and responsibilities so you can be an active participant in the
process.
Sometimes, you might need to work with more than one agency to get what you need because of funding constraints. Although this can cause additional effort on your part, it can be used as a strategy. For example, you find yourself in a situation where you need two pieces of equipment. One agency might authorize one piece of equipment while another agency can be shown to have purchased the other piece of equipment. Multiple agencies can also share the cost of a service or piece of equipment you require. Getting what you need frequently comes down to the source of funding.
It can take months and sometimes years to get what you need. There can be problems getting insurance approval or making progress with the vendor who provides the service. Sometimes, it is not clear where the problem lies or whom to contact. Keep a record of dates of phone calls, letters, meetings, and what was discussed. Keep a hard copy for documentation in case you find yourself in a position that you do not have any choice but to file a complaint. A hard copy is also important if you decide to appeal a decision that does not meet your need.
If you are having difficulty getting a needed service,
are receiving substandard services, or are not satisfied, you can
ask your doctor to further document need or for alternative approaches.
If you are having difficulty with your insurance company, you can
talk directly with a insurance representative or write a letter
to the customer services department within an insurance company
to further justify need or to find out how to appeal if you are
denied a service. If you plan to appeal a decision, keep track of
timelines. If you need assistance or further ideas about how to
appeal a decision or to better advocate for your needs, see the
section on Advocacy or contact an Independent Living Center in your
area.
