POWER OF FAMILIES

Families of children with disabilities prove time and time again they have the power to make a difference. Historically, the efforts of family members were the primary reason children with disabilities moved out of institutions and into schools and their communities. It is the power and persistence of families that allows individuals with disabilities to become full members of society. Below you will find quotes from family leaders who made a difference in their own child’s life, in the lives of other families, or within organizations or systems. We hope you will find inspiration and ideas for your own leadership activities.

 

Making a Difference for Your Child and Family

Families face a variety of challenges in their efforts to help children with disabilities get the most out of life. Here are examples from family members across the country who have used skills from their leadership training to make a difference in their own family’s situation.

I have been successful in getting my town to include four children with deaf-blindness in a recreational program offered to other children in town.

I find it easier now to talk to parents, professionals, doctors, and other service providers when it comes to my child, deaf-blindness, and my child’s diagnosis…I’m not afraid to ask questions to get the best care out there for my child…Every child deserves the Corvette model…this Mom is saying “no” to the “push mowers” out there.

Listening to other parents’ stories is inspiring and motivates me to keep telling my story about my child.

I’m trying every way I know how to have my voice heard: blogging, essay writing, belonging to support groups, talking to other families.

I have increased my knowledge about special education rights and procedures.

I have used my training and skills to help other parents approach their schools with more confidence. I have much more confidence during my son’s meetings and have the knowledge I need to better equip him with the resources he will use the rest of his life.

I have advocated for my child’s educational needs more assertively and effectively, which is HUGE for our family. Leadership training made me feel like I had a place at the table, along with the right to attend meetings and speak up. I was no longer “just” the mom they had to notify.

I have used my skills to advocate for my daughter at IEP meetings.

 

Making a Difference by Supporting Other Families

For family members raising a child with a disability, it is impossible to overemphasize the importance of finding support throughout the journey. Here you will find examples of how family leaders support one another, both formally and informally.

became a board member of our Deafblind Family group and worked closely with our deaf-blind project’s Family Support Coordinator to plan our annual family retreat.

I had a goal to create a Parent Leadership Training in Spanish, based on the leadership training model used in our state. That required more than translating. I needed to adapt the format, the curriculum, and the time frame of the workshops to accommodate the needs of the families.

I am ready to venture onto my next half marathon race for The MAGIC Foundation.

started a support group for exceptional families in our town. It is still going every month and I have handed the reins over to other parents. I also coordinated lunch meetings to introduce families to local resources for their children.

As an advocate I help others learn to understand educational needs, ask for services that will improve their child’s life, and approach their schools with more confidence.

Following our family leadership training, three of us designed a brochure, business cards, and t-shirts for our family network group. We also developed a Facebook page to keep in touch with each other.

organized parents to push our state school for the deaf to address the transition needs of students with multiple disabilities.

 

Making a Difference by Changing Your Community or a System

Family leaders often use what they’ve learned working for their own child to make a difference on a larger scale. This might mean working to change access and attitudes in their communities or addressing issues within local, state, or national systems such as school districts, provider agencies, government, or the medical system.

I now have a job in the disability field and use what I learned. I am an Employment Support Specialist and work with individuals to obtain successful employment and to maintain their jobs. I love my job and the work it entails in helping individuals with disabilities in the community and in school.

I have been successful in getting my town to include four children with deaf-blindness in a recreational program offered to other children in town.

I felt very confident going to our State Capitol and talking to legislators and staff about why cutting Medicaid, in any way, was bad for people and families. It also gave me a stronger purpose for why I need to do this work. Other families in my situation have children in school or are at a critical point in their child’s health and can’t do the work I am somewhat able to do.

My husband and I tell our story to two college classes each year—I am now able to incorporate some of the skills I’ve learned into that experience and be more educated about the impact deaf-blindness has on a child and their family.

Family leaders have been responsible for legislation being passed to expand services for children with deaf-blindness within our state and a few have even been involved in national legislative issues.

organized parents to contact state officials to draw attention to the impact of state budget cuts on educational services for my daughter and other children with multiple disabilities.

Family leaders now comprise the majority of our family organization boards as well as serve on state-level advisory committees and boards.

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Helen Keller National Center

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NFADB exists to empower the voices of families with individuals who are deaf-blind and advocate for their unique needs.

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