Max's Mommy in the News

The following article was published in the Bellingham Herald today:

Sep, 7, 2007

Mother of disabled son advocates change
Training will help families navigate political process

BELLINGHAM — A new leadership development program aims to help families of people with developmental disabilities turn their frustrations into political action.

Having a child with a developmental disability usually results in an unexpected crash course in working with schools, doctors and the government to get the services the child needs, said Amy McKinley, coordinator of the program.

But the 15 participants who join the “Real People, Real Lives, Real Power” program will also learn political advocacy skills that could help them fight those battles more effectively, McKinley said, and help make changes for the larger community.

The 12-month leadership program, open to people with developmental disabilities and their families, is partially funded by a $13,500 grant to The Arc of Whatcom County from the state Developmental Disability Council.

In addition to the training, the program covers respite care during the sessions.

From nursing services to special education programs, much of what disabled people and their families rely on depends on state and federal policies, McKinley said, but those services typically fall far short of what the families really need.

The training is designed to make people feel more comfortable making those calls and writing those letters — and encouraging others to take action, too, she said.

McKinley learned about the state grant program as she was beginning to care for her 2-yearold son, Max, who was born with physical and developmental disabilities.

She learned plenty about shortfalls in the system, McKinley said, but she wanted to learn how to help change it.

“I didn’t want to become one of those frustrated parents who only complain about the system and doesn’t do anything about it,” she said.

McKinley worked in politics in West Virginia and Washington, D.C., for several years before she had Max, including time as a press secretary and with a communications firm, so she knows how the political system works.

But navigating the system for developmental disabilities is still overwhelming, she said, and many parents are intimidated by the political process.

“People are just so scared to talk to their representatives,” McKinley said. “No, they’re there for us. They want to hear from us. They need to hear from us.”

In its seven meetings throughout the year, including a trip to Olympia, the group will learn about the history of the developmental disability movement, how to testify before governing bodies and how to promote awareness among friends and family.

They’ll also select and launch a community service project.

“This is a unique opportunity for parents and self-advocates to take their experiences and turn it into action,” McKinley said.

Way to Go Amy! We are so proud of you for your amazing, incredible ability to not just make the best of "non-ideal" situations, but do something that truly will make a difference in the lives of so many others!