Something’s Gotta Change

Those of us who live in California and have a child with developmental disabilities should thank their lucky stars for the Lanterman Act.  Take a look at what people in other states face on a daily basis (excerpt from an article):

Nearly lost amid the throng at the raucous hearing <about closing a state institution in New Jersey> earlier this year was the mother of Derek Legutko, a 26-year-old with autism who’s living at home while waiting for a community placement. It’s already been four years, and likely to be a lot longer.

Deborah Legutko of Ringwood and her husband, Michael, are both in their late 50s. They worry about their ability to keep up the care Derek requires and wonder whether the state will ever offer their son the kind of group-living arrangement they say he needs.

“His number on the priority waiting list is 1,171,” she told the hearing. “Derek will probably be with us for the rest of our lives.”

The Lanterman Act entitles people with developmental disabilities, regardless of age or degree of disability, the services and supports necessary to live as independently and productively as possible in their own community. The next time this Act is threatened due to a desire to balance the state budget, be sure you understand that you could end up like the Legutko family.

What is the answer for those who do not live in California and are facing a lifetime with no options other than living in the family home with aging parents?  I think that it is past time that parents band together and take matters into their own hands.  I’ll give you an example of how this worked within my agency.

For the first time after 30 years of providing residential services to adults with developmental disabilities, we were approached a few years ago by a group of families who wanted us to develop a home for their young adult sons with autism.  These families had a laundry list of wishes, including a home with a pool far from busy roads, high levels of staffing and staff competency, special diets, vacations, private rooms, and much more. Would we be willing to help them put this together and to run it on their behalf?

We started by telling them that the state and federal dollars we receive for residential care cannot touch the types of supports they wanted in the home.  We couldn’t guarantee that we could fundraise the dollars, year after year, that it would take to keep a home like they wanted up and running. There was also a need for start up funds to get the house into shape to meet their needs and licensing requirements.

So the families kicked in money to make it happen.  Just like they would for their other kids without disabilities, they did what they had to in order to assure their child’s future.  I don’t know where they found the money.  Maybe they mortgaged their homes or took out a loan.  Maybe they asked relatives for help.  We helped by getting grants to get things going.  The house is now up and running, and it is a beautiful model of what is possible when agencies and families work together. They have, in the process, created an extended circle of support with each family watching out for the needs of the others.

We have to stop relying on government systems and government dollars for the future of children and adults with developmental disabilities. I know that some people live paycheck to paycheck, and these folks simply don’t have another option beyond government funding, however many people with extensive financial resources continue to be unwilling to spend their own money to secure their child’s future.  They will pay thousands of dollars for lawyers and advocates to get the state to pay when those thousands would be better spent investing in services that will help their child lead a life of quality. Something’s gotta change.

Let me know your thoughts.  Till next week—Dr. K.