If You Don't Do It, Who Will? 1

WHAT IS A HEALTH ADVOCATE?  When most people hear the word "advocate," they think of the efforts, even struggles, of individuals who take action to influence government programs and policies.  Although many parents engage in this level of advocacy, organizing to put pressure on policymakers and officials, advocacy can also take place on a more personal level.  It means making the case that something is important and needs to be done. When families advocate for their children that's what they're doing—presenting information and making requests in a focused way to ensure that something important gets done. 2

HEALTH ADVOCATE  What I learned has saved me a lot of time, grief, and feelings of helplessness.  Here are some tips for getting started. And don't worry: being an advocate for your child is much easier than being an advocate for yourself! 3

ORGANIZE  What I learned has saved me a lot of time, grief, and feelings of helplessness.  Here are some tips for getting started. And don't worry: being an advocate for your child is much easier than being an advocate for yourself! 4

DOCUMENT! 5  Carry a paper and pen with you to your medical appointments.  Take notes.

DO YOUR OWN RESEARCH  This is important for simple matters like routine vaccinations as well as complex medical conditions. There are a number of valuable online resources that can help the layperson to become knowledgeable about any medical concern. Start with the U.S. National Library of Medicine, the National Institutes of Health, and Medline. Commonly-used websites like WebMD will get you started, but if you're looking for more than a surface treatment on the subject, you'll want to read some more developed (and difficult) material.  Part of researching is also checking into your child's doctor. Check your state's medical regulatory authority to find out if any disciplinary actions have been taken against your doctor, or if any complaints have been filed. 6

DISCUSS WITH YOUR DOCTOR  Once you've done some reading on the subject and you have some thoughts and questions, run them past your doctor. Do not feel as though you have to rush through. Your doctor is very busy, it's true, but your doctor's office bills your insurance company for an hour of their time when they spend ten minutes with you.  Don’t back down. 7

8  If you feel that your doctor isn't doing enough, or that your doctor doesn't know as much about your child's medical condition as you'd like, you're probably right.  It's time for parents to trust their instincts when they feel that something isn't quite "right" about their relationship with their child's doctor-it never hurts to look around and see what else is out there. TRUST YOUR INSTINCT

CONNECT WITH OTHER PARENTS  This applies especially to parents of children with specific medical conditions, but even parents researching routine healthcare matters like vaccinations can use this tip.  The internet is chock-full of support groups for parents of children with asthma, cancer, allergies, autoimmune disorders, and virtually any other medical condition imaginable. 9

THE ROLES OF FAMILIES IN Affordable Care Act (ACA)  “President Obama signed the ACA into law in March 2010 and is often called national health care reform. This legislation dramatically expands health care coverage to uninsured and under-insured Americans. It also provides much needed protections and other positive changes to all the programs that make up the US health care system including Medicare, Medicaid, and individual and group insurance.” 10

Families Are Key to Curbing Health Care Costs  Because families have a powerful effect on individuals’ wellbeing, research shows that a family-centered approach to health care may help curb rising health care costs. According to University of Minnesota Professor William Doherty, “the family is the hidden agent of health activity in the United States.” 11

FAMILY INVOLVEMENT  Researchers increasingly recognize families’ important roles in influencing lifestyle factors and as gatekeepers to the health care system. From prevention to long-term care, families both influence and are influenced by the health of their individual members. 12

FAMILY INVOLVEMENT  Researchers increasingly recognize families’ important roles in influencing lifestyle factors and as gatekeepers to the health care system. From prevention to long-term care, families both influence and are influenced by the health of their individual members.  Families can help promote health and reduce the risk of illness. 13

SUPPORTING FAMILIES CAN HELP PREVENT DISEASE ONSET  Research reveals that family stress makes individuals more vulnerable to illness. People who have lost a spouse, especially men, have markedly increased death rates, even after controlling for other health risks. 14

FAMILIES INFLUENCE HEALTH CARE AND TREATMENT  Family members play an important role in diagnosing and treating illness. Access to medical services and decisions about when to seek them out are also family issues.  Research reveals that family stress makes individuals more vulnerable to illness. People who have lost a spouse, especially men, have markedly increased death rates, even after controlling for other health risks. 15

FAMILIES WITH ACUTELY ILL MEMBERS SUFFER STRESS  During the acute phase of an individual’s illness, family stress levels can be equal to that of the patient, even after the patient begins to recover. 16

FAMILIES ARE KEY PLAYERS IN CARE AND RECOVERY  Caring for a chronically ill family member can be stressful. Increased family stress and subsequent greater health care use often translates into higher costs for both families and society.  On the other hand, research shows that family centered interventions for chronic illness are highly effective in handling health problems. 17

Family Support Network  Doing whatever it takes for families that include a member with a disability to just be a family.  The mission of the Family Support Network is to unify individuals with disabilities and their families to advocate for funding, services, and community resources that strengthen and support the individual and the family directly by responding to their individual needs and empowering them to live in their own homes. The Family Support Network further seeks to ensure the continuation of all individual supports throughout the life span of the individual. 18

GOALS OF FAMILY SUPPORT  To keep families together until the person with a disability chooses to live independently;  To enhance a family’s ability to meet the many needs of their family member with a disability;  To improve the quality of supports to families while minimizing the need and the cost of out-or-home placement;  To allow the family to participate in integrated leisure, recreational, and social activities; and  To make a positive difference in the life of the person with a disability as well as the lives of all family members. 19

SUMMARY 20  Health care reform is the result of many years of advocacy and partnerships between consumers and professionals.  Health care is one area that all families of People with disabilities need to be actively involved in, starting at the individual level.  The Family Support Network (FSN) exists to support individuals/families to develop and/or enhance their advocacy skills.

21 Pictures retrieved from: BE A HEALTH ADVOCATE FOR YOUR CHILD! IF YOU DON’T WHO WILL?

CONTACT INFORMATION: Shirley A. Perez, Executive DirectorFaye Manaster,M.Ed, Project Director Family Support NetworkFamily Voices of Illinois Mike Kaminsky, Director Illinois Life Span Project The Arc of Illinois 22

23 References: Institute of Medicine. (September 2002). Health Insurance is a Family Matter. Wisconsin Department of Health and Family Services. (October 2002). Wisconsin Health Insurance Coverage :