Katydid Foundation, Inc.

A move only five houses away led to a new life for an autistic woman and her family
By Anita Perkins

A recent Google search for “autism” produced more than 18 million hits. But few are related to adults on the autism spectrum.

For parents of young children diagnosed with the neurological disorder, any kind of connection to information is a godsend. However, developmental milestones don’t end at age 22. In fact, all of the years of searching for the right diagnosis, programs, interventions, medication, therapy and services are significant reasons to continue to search for appropriate daily and long-term supports for adults with the disorder. Now, more than ever, the resiliency of parents with children and teens on the autism spectrum is necessary to forge through the complex maze of bureaucracy and funding.

Unfortunately, there is no mandate for services for adults similar to the federal and state special education laws. That leaves parents without a roadmap. Some states have taken the lead to encourage individualized programs such as self-determination and individual support plans. Without such guidance, many are left to flounder in the murky waters of “adult services.”

As the mother of a young woman with autism/PDD, I thought my daughter Katie was set for life. At 22, she was placed in a state-funded group home. However, she was the only resident with a staff that changed daily. In spite of two years of “transitional planning,” that setting led to criminal neglect and abuse in less than a year. Unfortunately, it happened again in a second group home.

After two dismal failures with the typical group home system, I knew I had to find a different way. But my daughter’s severe behaviors and issues meant I could not handle her at home. She had been in residential care since the age of 12. So like everything else related to autism, I went with my gut.

I put my career on hold, bought a house with a woman I barely knew and set up a nonprofit corporation. I was like a parent trying to release my child from being held hostage by a dysfunctional system.

All of the experts told me I was crazy to strike out on my own without a map. I knew they were probably right. There was no map. At the time, officials at the Massachusetts Department of Mental Retardation said they could not set up a program without using a licensed vendor.

But strike out I did from sheer desperation. My unpaid status as the CEO for a grassroots nonprofit meant losing my paying job and benefits, just a few years from retirement. With nothing to guide me, Katydid Foundation Inc. was established in 2004 to set up innovative, individualized housing for adults. The only problem was the lack of money available to run such a program.

As a single mother barely making it on my own, this seemed like the ultimate obstacle. But on we went, gathering steam and support along the way. Like following a trail of bread crumbs, suggestions came from a string of unlikely sources – friends who helped furnish the 14-room house, donations of paint and carpentry services and most of all, experienced employees who came on board.

Within three months, we had a house and a contract with the state to run a residential program for my daughter and a disabled man. We were told we were the first of its kind in Massachusetts. We hired an experienced staff and watched our dream take flight. Coincidentally, the home is located just five houses away from my daughter’s last group home. But the journey from the old life to the new one proved to be light years apart. The first couple of years proved that we were right on target. Both residents blossomed and the state declared the program a success and model for other families. But of course, that’s not the end of the story.

The 100-year-old house proved to be suffering from years of neglect. No money was available when the furnace broke in sub-zero temperatures. The state contract barely covered staffing. We had to put up two residents and their staff at a hotel for two weeks and come up with the dough to repair the heating system. Shortly after that, the used van pooped out. After throwing good money after bad, we had no other choice than to buy another vehicle.

Of course, this was while I was unemployed.

Now we are starting our fourth year and beginning to branch out. Our fledgling nonprofit is now offering a forum for families searching for answers on how to navigate the complex world of adult services. The Web site www.katydidfoundation.org serves as a clearinghouse of information, resources and support especially geared to housing, funding and a la carte services.

This blog will share the story of how and why we stepped out of the conventional arena of vendor services to create a home and services run by families. It will include some positive lessons we learned along the way and some we’d like to forget.

Some of the successes included consistent staffing with live-in caretakers, public subsidies and fundraising drives, proper nutrition and family involvement. Yet even the negatives turned into positives such as a closer and cooperative relationship with mental retardation officials and local politicians.

Still, Katydid is not the only individualized program. The larger goal is to invite other families to tell their stories, both successes and failures, so all of us can benefit. Someone in Malaysia might have a suggestion that would work in Massachusetts or Montana. I encourage you to write, send photos and ask questions. Someone, I’m sure, has the answer, or at least will offer a helping hand.

Anita Perkins Parent and founder of Katydid Foundation Inc.
www.katydidfoundation.org
978-465-2335