From the Executive Director
Richard J. Robison
Federation for Children with Special Needs
“Nothing About Us Without Us!” is a slogan often used by advocates and leaders in the disability community to make it clear that any discussion about rules, program procedures and policies must have meaningful representation from the population being served. “Population representation” is a cornerstone of our democracy. It promotes the voice and participation of the people affected by the decisions made by those in power. The December 2009 issue of the Axis Group I’s Reality Check newsletter (http://axisgroup1.net/) includes an article by Connie Wells, a long time advocate of quality health care for children with special health needs. She writes about the “Authentic Voice: the voice of those originating from the population served by the program; the voice of individuals whose lives will be directly impacted by the outcomes of program planning, development, implementation and evaluation.”
In general, however, our democracy operates on the idea that “majority rules.” Hence, we tend to make decisions based on the opinions of 51% of the people involved in the discussion. This raises some serious problems for those groups who, by virtue of their numbers, will always be in the minority.
Promoting the voice and participation of families, consumers and individuals with disabilities ensures that the intent of a program or service is truly obtained. Many state and federal laws, publically-funded programs, professional and family consumer organizations have built in safeguards to ensure that the involvement and “authentic voice” of the consumer is heard, even though, at times, these procedures may be trivialized or ignored, especially if you’ve ever felt like the “token parent” at a meeting. In these difficult economic times, parents of children with special needs and those at risk need to be heard. The Federation for Children with Special Needs was founded and has thrived for 35 years on this very principle. We are a parent-run organization founded by parents for parents. Our unique mission and guiding principles seek to empower families to maintain their voices in reliable and effective ways. So, get up, get out, and get involved. Share your voice. Be active in at your children’s schools, ask about advisory opportunities at your early intervention programs, primary care practices, hospitals, and within the agencies that provide services to your children and families. The various projects at the Federation can offer you any support you may need to participate.
There is another saying, “Walk a mile in my shoes.” Urge others not to second guess the money spent on services and supports for our children with special needs. Children with special needs enrich our lives. We greatly admire our children’s perseverance in light of the unique challenges they face everyday. In difficult economic times, it is tempting to cut services and supports to children with special needs and to children at risk. Some in positions of power may think economic circumstances override the voices of our children and families. It is precisely in times like these that our voices need to be heard. Our voices may seem meek at times, but together we will roar like lions. Let your voices be heard!