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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 in order 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 your issue may receive.

Levels of Advocacy

The most basic level of advocacy, sometimes called self-advocacy, is that which affects your own child and family. For example, 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 your child's school to provide safety barriers where the wheelchair ramp goes into the school. The barriers are 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 requesting will help others in a similar situation.
The next level of advocacy involves asking for a system change on a state or national level. For example, you’re working towards this type of system change when:
  • You explain your needs, which also represent the needs of many others, to a state agency that influences how funding is dispersed. An example of successful advocacy is the increase in funding for Respite Care services that was the result of families voicing their need for relief from the necessary 24-hour a day care required by their special needs children. (see all Respite Care services providers (45) in our database)
  • An inspiring example of advocacy at this level is Julie Beckett, a single mother who worked to change the Medicaid laws so she could care for her daughter at home. The result of Julie’s advocacy was the Tax Equity and Fiscal Responsibility Act of 1982 (PDF Document 8.0 MB) . The home and community-based waiver program, often called the Katie Beckett Waiver program, allowed kids who otherwise would have been forced to be institutionalized or hospitalized, to be treated at home by keeping them eligible for Medicaid. Julie and her daughter Katie continue to serve as enthusiastic advocates for children with special health care needs.

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. Network with other parents. Find information through your local or hospital library, the internet, health newsletters, and local parent support groups. Locate existing advocacy groups and find out what has already been done to address your issue.
(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 see all Family Advocacy services providers (26) in our database service providers in our database).
(3) Learn how to navigate the system - This 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 you make your request, identify yourself and briefly identify your issue. Be to the point, and polite. It is also helpful to give one or more reasons for your request. Sometimes it helps to write this down first to make sure you can summarize what you want to say 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 the people 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.
(6) Keep track of your advocacy efforts - Document your correspondence and the actions you’ve taken to addresss your issue. Keeping accurate records will save you time as your issue progresses, and will help you communicate about that progress, and what you still hope to achieve, more quickly and clearly.

Resources

Information & Support

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 Grassroots Advocacy Partnership
Utah GAP provides education to the disability community that allows individuals with disabilities and their families to proactively advocate for the policies and services needed though the interaction and engagement in the making of public policy.

Utah Health Policy Project
The Utah Health Policy Project (UHPP) is a nonpartisan, nonprofit organization dedicated to lasting solutions to the crisis of the uninsured and rising health care costs.

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 (57) in our database.

Education About Disabilities/Diagnoses

See all Education About Disabilities/Diagnoses services providers (99) 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 (113) in our database.

National Support Groups, Disab/Diag

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

Respite Care

See all Respite Care services providers (45) 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, 12/2012
Gina Pola-Money, 1/2012
Content Last Updated: 1/2012