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Advocacy/Finding Your Voice

Advocating for Your Child

An advocate is someone who pleads the cause of another, someone who champions another person’s needs. Advocacy means to speak on behalf of something or someone.
As a parent or loved one of a child with special healthcare needs, you learn about advocacy very quickly. You may not understand what this truly means, or you may be a little intimidated by the word itself--isn’t that a legal word? To advocate means to speak up for someone, so yes there are legal advocates, but in the life of a person with special healthcare needs, advocacy is a necessary part of everyday life.

Individual Advocacy

The sooner we become advocates --- informed, strong voices for our children --- the smoother life becomes for our child and family. The following advocacy tips, based on years of experience and gathered from hundreds of families can be used with your child’s doctor, hospital, clinic, therapists, preschool, child care center, classroom, community, and with extended family and neighbors. While one can advocate on behalf of a large group or community, you’ll always begin advocating, of course, with one child…yours.

  • As soon as possible, connect with another family who also has a child with special needs. Talking with a parent who also never sleeps, feels inadequate at times, and is frightened will be helpful and empowering. Other parents understand and can be your best teachers in navigating this new, unfamiliar world.
  • Learn everything you can about your child’s diagnosis and potential needs, from your pediatrician, early interventionist, therapist, other providers and other parents.
  • Find out about services for your child, including special clinics, pediatric specialists, therapies, equipment, early childhood programs, and state and private agencies. Inquire about financial eligibility, free services, and, most importantly, where to get the best care.
  • Keep records of all phone calls, doctor visits, insurance bills, notices, and forms related to your child. Always take notes, including the date of the conversation and the name of the person you spoke with. If you’re not a good note taker, bring a friend who is, or use a tape-recorder, or the voice memo feature on your phone. Request copies of everything. Put all your child’s paperwork in one place--a box in the kitchen, a notebook, or a bedroom drawer, whatever works the best for you.
  • Become an expert on your child’s health insurance plan, whether private or public such as Medicaid. Know the benefits covered. Read everything from your health insurance.
  • Be open to learning new things. There are always at least two sides to an issue. Understand what the opposition may be to better understand how to advocate your side.
  • Develop strong partnerships with the professionals in your child’s life. Your child’s primary care clinician, specialists and therapist can be trusted partners that can help advocate for appropriate services and resources that your child and your family may need.
  • Know that YOU are your child’s best advocate. No one else can do the job as well. Use all your information, contacts, friends, and skills to advocate with kindness and humor. Mentor a sibling or friend to do so too, for the times that you won’t be able to be there.
  • Teach your child self-advocacy skills as soon as possible. You can encourage the development of these skills by providing an example, but also be sure to provide opportunities for your child to speak and advocate for himself, about his needs and desires, about his life and future. Encourage your child to speak with providers about his special needs to whatever extent he can.
  • Take care of YOU, which means advocating for yourself as well. Have a backup plan for those times when you need someone else to take the lead. No one can know that you need assistance with something unless you speak up. Sometimes it will seem harder to advocate for yourself than it is for your child, but you can’t effectively take care of your family if you don’t care for yourself too!
Communication Tips for Advocacy:

In the world of special health care needs and disability, advocacy means speaking out about an issue that directly concerns your child. This can mean talking to your child’s teachers about her education, your child’s doctors about her health care needs, or policy-makers about family support resources that would benefit your child, family, and community. Here are some tips to help advocate for specific needs:
  • Have a good idea of what you want and why you want it.
  • Practice rephrasing what you will say...maybe with a friend.
  • Speak clearly.
  • Maintain eye contact (as much as possible).
  • Take your time when talking, and ask for time to think if you need it.
  • Rephrase (repeat) what you hear to be sure you really understand.
  • Be respectful.
  • Be careful of your body language (do you look or act angry, impatient, or frustrated?).
  • Be flexible and ready to compromise.
  • Following up is critical.
  • Make it very clear about the positive impact if your issue is resolved.

Advocating for a Larger Community

Parents are often the most powerful advocates. You have the personal experience and the real life stories to share— you can make a difference. Your advocacy efforts will begin with your own child, but there will be times when you see an opportunity to move beyond your own family’s needs. Some next steps may include:
  • Help another family that is just learning about their child’s needs and how to navigate the complicated systems of health care or education by being a parent-to-parent support.
  • Ask a disability organization or a parent support group how you can get involved.
  • Ask your healthcare providers how you can help to improve care for all children.
  • When you feel ready, find opportunities to help change systems. You might consider volunteering on an advisory board, or offering to participate in state agency consumer groups that develop and improve policies that benefit others.
When you advocate effectively for your own child’s needs, you may end up changing a whole system to better meet other children’s and families’ special needs.

What do I Have to Offer?

Getting involved in advocacy at a systems level takes time and energy. Many families with a short supply of both wonder, “Is it worth it?” After all, what do you, as a parent, have to contribute? How will you educate professionals and policy-makers who already know everything?
The fact is, you have so much to offer. Although professionals and policy-makers have expertise in their respective fields, they need and welcome your input. They benefit from your perspective, knowledge, and unique expertise of how programs, services, and resources work (or don’t work). You have the power to create positive changes in your child’s life, and in many other lives.

What if We Just Can't Agree?

Because there are always multiple sides to every issue, there are times when there may be a disagreement that seems irresolvable. Here, we offer some potential strategies work towards the best solution:
  • Share your assumptions and perspectives.
  • Listen with both your head and your heart.
  • Try to think and feel about the situation from the other’s perspective.
  • What might make it easier for that person feel more comfortable with the situation?
  • Find a compromise.
  • Try restating the problem.
  • Identify options and opportunities.
  • How can constraints, negative experiences, and concerns be acknowledged and addressed?
  • Include others to find a solution. Who might offer a useful or necessary perspective?

Advocating for Legislative Change

Funding decisions are a big part of determining what services are available for children, youth, and adults with special needs and their families. . Congress and State Legislatures make difficult decisions that directly impact lives. Advocating at the systems level of the government can be intimidating and overwhelming, but remember that you can make a difference.
Advocacy is already part of your life. Most of us advocate every day. Your experience speaking up for your child in school, with a neighbor, or for a friend in need, enables you to become a very effective advocate for the needs of other children with special needs and their families.
There are four basic steps to becoming involved in the legislative advocacy process. They are:

Step 1: Choosing and Learning about Your Issues

Identify what issues of concern you want to influence. There are too many different areas for you to attempt to advocate for them all effectively at once. Focus on a few priority topics, like the education system, healthcare access, housing or disability services and learn more about the challenges and what possible solutions there may be. Contact your local representatives
Once you identify your advocacy issue, you need to TELL YOUR OWN STORY to policymakers. It’s very likely they have are not very familiar about your needs. While you do not need to know everything, you must be able to answer the question “why does this issue matter?” Learn as much as you can about your issue; find available resources such as existing advocacy or disability groups, legislative coalitions, and providers of services.
Step 2: Identify the Decision Makers

Call your local county clerk and ask for the names of the legislators that represent your community. You can also go to Vote Smart to find the names of the legislators and policy makers that represent you.
Step 3: Understand the Legislative Process

Advocacy begins when YOU recognize a need to improve a program, create a new program, or change a state statute. Begin by talking to advocacy groups and getting others involved. Then talk to state agency directors and staff to get additional information about the need or issue. Finally, take your issue(s) to legislators. The first contact should be to the representative in your district. They want to hear from and know their constituents. Even if they are not on the committee that will make decisions about your issue, they can communicate with their colleagues that will vote on the issue.
To understand how to influence potential legislation, you must first discover how the legislative process works. The State Legislature is responsible for making and changing state laws, as well as setting funding levels for the executive branch of government (the state budget). There are two processes that take place. The Appropriation process decides the state budget and sets the funding levels for state agencies and programs. The other is the Bill process which creates or changes state statute and creates new programs. If your issue is in the Appropriations Process you want to find the Legislative Appropriations Committee that will be discussing your issue. Contact the members of the committee to educate about why the issue matters and what it means to your family. If the issue you are concerned about is going through the Bill process, identify who the sponsor of the bill is and provide information about how it will impact your family. A bill will need to be heard by the committees and voted on seven times favorably in order to become law.
Legislative information can be found on State Legislative websites which provide information and tools as well as links to live and archived committee meetings.
Step 4: Communicating Your Views

You can email, call, or visit policy-makers. You can also testify at a committee meeting. Personal contact can make a big difference. No matter what form you use to communicate your views or needs follow these guidelines:
  • Always identify yourself by name and address. Perhaps the most important thing you can say about yourself is, “I am a voter in your district.”
  • Be brief, informed, and polite.
  • Identify the issue, budget item, or bill you want to talk about. Don’t assume they know about it--they have so much to deal with!
  • State your purpose for calling and state your position. Give one or more reasons for your position. It is almost always a good idea to speak from personal experience.
  • Tell your own story.
  • Always thank them for their time.
Calling

Policymakers pay attention when citizens take the time to call and convey their views, especially when it comes from constituents in their home districts. Call just before upcoming votes in committee, on the floor, or late in the session.
Emailing

Email is a good communication mechanism. You may want to send as much information as possible early on and continue to follow up since legislators get a lot of communication and information throughout the legislative session.
Visiting

Call ahead and make an appointment and be on time. Respect their schedules by being as brief and to the point as possible. Plan on taking no more than 10 minutes as well as giving them a one-page outline or short fact sheet to refer. The handout is a great way to remind them about your visit and concerns. Make sure to provide your name, phone number and email address on the handout so they have an easy way to contact you with any questions or for additional information.
Whether you’re an advocate for your family or for larger systems, your voice counts. Sharing your perspective and speaking up about what is working or not working is meaningful!
"Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it's the only thing that ever has." - Margaret Mead
To learn about the US Congress legislative process go to The Legislative Pocess

Resources

Information & Support

For Parents and Patients

Advocacy ATLAS
Online Advocacy ATLAS is a toolkit created by Genetic Alliance, Parent to Parent USA, and Family Voices that provides individuals with special healthcare needs and their families with tools and strategies to advocate for whatever they may need. Resources for: Access to Healthcare, Accessibility, Communicating About Your Health, Advocacy Leadership, Insurance and Financial Assistance, Transition to Adulthood, etc.

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.

Golden Rules of Effective Advocacy

Services

Disability/Diagnosis-Specific Advocacy

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Education About Disabilities/Diagnoses

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Local Support Groups, Disability/Diag

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National Support Groups, Disab/Diag

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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: 10/2013