Little did a 6-year-old Terrell Dougan suspect that the birth of her baby sister would set her on a course of passionate advocacy that would last a lifetime. Terrell, author of That Went Well: Adventures in Caring for My Sister, has been a voice for those who cannot speak for themselves since the tender age of 12.

Terrell's younger sister, Irene, was diagnosed with a mental disability due to a birth injury in the early 1950s. Terrell's father was a pioneer of special needs advocacy — both in Utah and across the nation — and she followed in his footsteps. From serving as president of the Arc of Utah in 1968 to being instrumental in creating the concept of group homes to serving with Utah Gov. Scott Matheson, Terrell has always been a woman with a cause.

Most recently, Terrell's passion has found a home with the Legislative Coalition for People with Disabilities and Utahns for Ethical Government. She says that the Coalition is one of the last advocacy groups in Utah for people with disabilities, and the dwindling support for such groups has led to her desire to change the way the legislature gets things done.

"The Arc of Utah closed its doors last year and funding for people with special needs is being sharply cut," Terrell explains. "These are people who have no paid lobbyists. They are little kids who can't speak for themselves and are constantly getting their budgets cut."

Terrell says that lack of funding has led to a merry-go-round of unqualified and underpaid employees at group homes and is creating unsafe living environments for those who are intellectually handicapped.

"There are plenty of young people who want to work in group homes but they are getting paid the same or less than at McDonald's. They go through staff like popcorn, and group homes are desperate."

One of Terrell's biggest concerns is a Utah law that allows elected legislators to also be paid lobbyists. he feels that this creates a situation where lawmakers are more concerned about "what's in it for them" than the best interests of their constituents.
,br> "We are trying hard to get Republican legislators to even pay attention," Terrell says, noting that a number of legislators she knows have people with intellectual disabilities in their own families, and they "proudly say 'We're taking care of our own and you should too.' But how?" Terrell and Irene recently attended the funeral of Kim Peek, one of the main models for the movie Rain Man. Irene and Kim grew up together in many of the same schools and social groups. Kim's father (who was over 80 years old) was still caring for Kim 24/7. Prior to Kim's unexpected passing, the family had long wondered how they would be able to continue to care for Kim.

The fact is that most families don't have the fiscal or physical resources to care for people like Kim and Irene who have long-term needs. Terrell's lifelong work (not to mention that of her father) is in jeopardy of being almost undone in the face of current economic hardship and legislative ambivalence.

"I've never seen such a poor attitude and unwillingness to consider the greater good," Terrell says. "Instead of making sure kids are safe in group homes, many [legislators] seem to be interested in whatever real estate or school voucher program will, in the end, if you connect the dots and see their private business, line their own pockets."

Terrell says that she believes the measure of a good society is "how we take care of the least of us. We've got to get people in the legislature who care about the citizenry, not themselves."

Terrell encourages concerned citizens to contact Utahns for Ethical Government at www.utahethics.org or the Legislative Coalition for People with Disabilities at www.lcpdut.org.

Image courtesy of Paul Dougan