By Nicole GuBrath
After seeing problems with your child, he or she is diagnosed with a developmental disability. Your child requires special help, and your daycare center can’t handle the needs. There is nowhere to go. You are already living paycheck to paycheck, and now you are missing work to go to doctors and therapy appointments.
You are told that early intervention is imperative to giving your child the chance to be independent. Therapy is expensive and isn’t covered by your health insurance.
You feel desperate. Your child needs your help, and their needs are becoming too much for you to handle.
You have been told about social programs and think that the government will help. You are directed to apply at the local Community Centered Board (CCB.) CCBs were created to attempt to prevent children and adults with developmental disabilities from being institutionalized. CCBs are designed to be a single entry point for long term care of those with disabilities and their families.
You fill out the packet of paperwork and are interviewed and accepted.
But there is a waiting list-and given little hope you will ever get off of it.
This is the problem facing many parents of disabled children in Colorado. There are more than 3,100 adults and children with severe disabilities that need support living services on the urgent priority waiting list and more than 4,500 families who are waiting for family-support services for their disabled children.
The CCB for El Paso, Teller and Park Counties is The Resource Exchange (TRE.) The waiting list at TRE is currently around 1,000 people.
Debbie Swanson, a fund-raiser from TRE, said that the problems are definitely with funding, as there is obviously little government funding available to meet the need. TRE has been doing much to bring awareness of the issues around the care for people with developmental disabilities to the community, and that she said that is our biggest need.
Colorado is currently 48th in funding for services for children and adults with developmental disabilities. TABOR laws have reduced funding and voters have denied small tax increases to help support the system.
There are 23 separate CCBs in Colorado. Each regional center maintains its own waiting list, so there are 23 waiting lists in our state for children, adults and families. There is currently an emergency waiting list, bumping some people up for services, but criteria for adding people to those lists varies from CCB to CCB.
State Rep. Mike Garcia (D) of Aurora, who is introducing a resolution to the General Assembly to create and interim bipartisan committee to improve the long-term health care system of those with developmental disabilities. Garcia is supported by The Arc PLAN (www.thearcplan.org), an alliance of seven county chapters of ARC. The goal of the Arc PLAN is to change the 23 waitlists to one statewide list and to eliminate the emergency waiting list. The Arc PLAN estimates that in some CCB service areas the wait will be 50 plus years if changes aren’t made to the system.
“This interim committee would study the issue of the thousands of Coloradoans with developmental disabilities and their families waiting for state and federally funded system supports. What is the system? How does it work?” Garcia asked when announcing his proposal. “Are Colorado citizens who rely on this system being treated fairly, and are Colorado citizens’ tax dollars best used in this system?”
If passed the resolution would create an interim committee to study the health care system for the developmentally disabled between July and December. For further information you can reach The Arc PLAN at thearcplan@yahoo.com.
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