UCP AffNet Entrance
Parenting & Families
Family Support / Respite
A Child’s Best Advocate Is the Parent
Each year, thousands of wonderful volunteers give their time and energy to UCP at the national and local level. This piece is about one of them. Susan Tachau is a member of the UCPA Community Services Committee and a volunteer member of the Board of Directors of UCP of Philadelphia and Vicinity.
For those who know her best or for those who have just met her, Susan Tachau immediately strikes you as someone who has worked tirelessly--and very effectively--for full and easy access to specialized services for all citizens with disabilities and especially for her son, Michael, who has cerebral palsy. She stresses how critical it is for parents and family members to not only push the system to maximize access to services for their own children or relatives, but also to speak out as a public advocate for all people with disabilities. “Don’t be afraid to raise a little hell because, after all, you are your child’s best advocate,” says the mother of three who, besides caring for a family, also has a career with the Institute on Disabilities at Temple University.
Tachau got her basic training in public policy in Washington, DC. “I have always been professionally interested in politics. After earning a Masters degree in Public Policy, I served as a staff member in both the Senate and House, dealing with domestic issues. I also worked as executive director for a national center devoted to small initiatives on technology and was involved with coalition building for a variety of issues. And that’s where I became acutely aware of the all-too-crucial interconnection between citizen advocacy and the arena of legislation and policy formulation.”
A native of Louisville, Kentucky, Tachau met her husband in college and then moved to Michigan. Their firstborn child suffered a grade 4 inter-cranial hemorrhage. There was no UCP affiliate in Ann Arbor, so they contacted UCP of Detroit for guidance. The Tachaus were urged to seek early intervention attention for their son. Thus began their lengthy -- and frequently frustrating -- search for adequate services for young Michael.
“We moved several times during Michael’s early years, not because we wanted to but because we were looking for just the right program for our son. We were not satisfied until we landed in Brookline, Massachusetts, where we enrolled Michael in an excellent local public school. We were also able to find a respite care program…so critical and so wonderful for parents and family caregivers. It was heaven!”
“Our next move took us to Pennsylvania, where we quickly discovered that we were living in a state in which the emphasis was on providing services to people with a mental retardation diagnosis and not to those with other disabilities. That’s when I decided that I had to become a full-time advocate…not only for my own child, but for others, as well. That was my personal epiphany and my life has not been the same ever since.”
Tachau speaks passionately of the dramatic difference that assistive technology (AT) has made in her son’s life. “People who have disabilities don’t want pity, they just want an opportunity to live full, productive lives, just like everyone else. And assistive technology is the door opener…the key to unlocking the potential of people like Michael. Access to appropriate assistive technology helps people to realize their full potential at school, at work, and in the community. Unfortunately, AT devices and services are still not as easy to get as they should be. We desperately need continued federal funding for State Assistive Technology Grants that support state projects tailored to local needs.” She cites five examples of core services that federally-funded AT projects deliver that otherwise would not be easy to obtain:
- Teach individuals, service providers, and gatekeepers about the scope of AT.
- Provide information on available AT devices, services, and sites.
- Operate lending libraries so people can try out devices before purchasing.
- Help businesses and schools understand the importance of AT for employees and students.
- Provide information on funding and lending sources.
Speaking of her son’s experience, she says, “The important thing for Michael is that he has access to services. New opportunities are always opening up for him. He is currently serving as a volunteer intern with the Valley Forge National Historical Park and is attending Temple University part time.” And what is Michael’s next challenge? “He’s not content to be just an intern. Rewarding as the Valley Forge and Temple experiences have been, he is now thinking about going to college, full-time and away from home, just like many of his friends.”
Tachau sums up the lessons she has learned in her two-decade journey of advocacy for Michael and others with disabilities. Here’s what she emphasized for those who have children newly diagnosed with a disability:
- Most importantly, parents and family members are a child’s best advocates.
- Get involved in coalitions, parent associations, and support groups.
- Go to public hearings.
- Attend rallies and participate in legislative visit days.
- Get to know the staff in local offices of your Congressional delegation.
- Build on small victories and positions of strength.
- Respond to requests from government agencies for public comment on policy changes.
- Search disability Web sites; you’ll be surprised at what you can learn.
- Be patient and be prepared to hang in there for the long haul.
- And above all, never give up!
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