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Advocacy

Advocating For Your Child

Advocacy means educating others about a need, small or large, in an effort to get help meeting that need. It can refer to consumer issues, like seeking a refund for a faulty product; or to community issues, like making a plea for a stop sign at a dangerous intersection. For families of children with special health care needs, advocacy becomes an everyday effort to improve the quality of life for their children and others like them.
Advocacy happens at many levels, from a conversation in the doctor's office, up to a visit with your legislature, but any effort you make is a step in the right direction. You can write letters, send emails, make phone calls, or attend support group meetings. The more you do to voice your needs, the more attention, and possibly funding, your issue will receive.

Levels of Advocacy

The most basic level of advocacy is that which affects your own child and family. You may need to advocate when:
  • Your child needs to see a doctor after hours, or when there are no appointments available.
  • Your child needs an unconventional testing format for evaluation at school.
  • You'd like your health insurance provider to make an exception on a denied payment.
The next level of advocacy is that which could also affect other children and their families, often asking for a change in policy. You are advocating at this level when:
  • You ask the personnel at child's school to provide safety barriers where the wheelchair ramp goes into the school. This is vital in preventing accidents, for your child as well as others.
  • You ask your insurance company to cover the purchase of sterile water for use in a ventilator, which is critical for a child needing humidification. Again, the policy change you are asking for will help others in a similar situation.
The next level of advocacy involves asking for a system change. A change in a system might be involved when:
  • You explain your needs (which also represent the needs of many others) to a state agency which influences how funding is dispersed. "Respite Care" is one service that has received increased funding because families voiced their need for relief from the 24-hour a day care required by their special needs children: see all Respite Care services providers (43) in our database.
  • You ask a local recreation center to include children with special needs in their programs and make adaptations in the programs if needed. This will enable children of all ability levels to enjoy sports and recreational activities: see all Recreation Programs/Activities services providers (164) in our database.

Basic Guidelines for Advocacy

(1) Choose and learn about your issue(s) - Identify the issue you most need to focus on and learn as much as you can about it. Talk to other parents, find information through your local or hospital library, the world wide web, health newsletters and local parent support groups. Locate existing advocacy groups and find out what has already been done on your issue (see Services below).
(2) Identify decision-makers - Find out who has authority to make decisions, whether it's a supervisor, a program director, a chief administrator or your local legislator. These are the people to whom you must appeal for changes in the system. Your local parent support groups can help you identify the appropriate decision-makers: see all Family Advocacy services providers (26) in our database.
(3) Learn how to navigate the system - Navigating the system can mean anything from learning the right vocabulary to use when calling about an insurance statement, to asking for the same office administrator when you need help at your doctor's office. It can also mean learning how the legislative process works so you can influence potential legislation: see Terms/Acronyms/Definitions or Definitions & Terms.
(4) Communicate your views - When making your request, be brief, to the point and polite. Identify yourself, your issue, and give one or more reasons for your position. Sometimes it helps to write this down first, to make sure you can summarize what you want and why. And remember, change takes time so you may need to be patiently persistent.
(5) Thank those who have helped - Always remember to thank those who have taken the time to listen to your needs. A simple written note of thanks can make a difference when the next person comes to ask for help.

Resources

Information & Support

For Professionals

Association for Utah Community Health (AUCH)
A grassroots action center providing resource tools and a database for advocates.

For Parents and Patients

Legislative Coalition for People with Disabilities (LCPD)
Advocates for public policy affecting all people in the State of Utah who have disabilities.

Utah State Legislature
Read about the progress of bills, laws and other legislative issues.

Services

Disability/Diagnosis-Specific Advocacy

See all Disability/Diagnosis-Specific Advocacy services providers (55) in our database.

Education About Disabilities/Diagnoses

See all Education About Disabilities/Diagnoses services providers (71) in our database.

Family Advocacy

See all Family Advocacy services providers (26) in our database.

Local Support Groups, Disability/Diag

See all Local Support Groups, Disability/Diag services providers (80) in our database.

National Support Groups, Disab/Diag

See all National Support Groups, Disab/Diag services providers (19) in our database.

Recreation Programs/Activities

See all Recreation Programs/Activities services providers (164) in our database.

Respite Care

See all Respite Care services providers (43) in our database.

For other services related to this condition, browse our Services categories or search our database.

Authors

Reviewing Authors: Alfred Romeo RN, PhD, 9/2008
Gina Pola-Money, 6/2008
Content Last Updated: 9/2008