For more than a decade, Colorado has maintained a waiting list for most of its programs for people with developmental disabilities. Before the economic downtown in 2008, this often meant that a person with developmental disabilities who needed support to live as independently as possible in the community would have to wait 10 to 15 years before receiving services. The wait now is indefinite.
The issue is money, or the state’s lack thereof. Although the majority of Colorado programs for people with developmental disabilities is funded by Medicaid, the state has to match dollar for dollar with the federal contribution. During the last 10 years, Colorado has hovered between 46th and 48th in the nation when it comes to funding for developmental disabilities.
Since the recession, the situation has become dire. As a cost-savings method, Colorado’s Division for Developmental Disabilities has essentially closed enrollments into the program that provides residential (access to 24-hour) care. While people still can get on the waiting list, very few ever come off that list.
Historically, local communities managed their own waiting lists. When a person in a local community left a program (generally by moving out of state, enrolling in another program or dying), the next person on the list for that region would enter services. Now, when a person leaves a program, that slot is either left vacant or goes back to the state to use for emergencies across the state.
Under this system, even people in crisis situations are unable to access needed services immediately. There is a waiting list for emergencies. People with developmental disabilities can get on the emergency list only if they are homeless, experiencing abuse or neglect in their homes, or are a significant danger to themselves or others. People across the state are living in harmful or dangerous situations until the funding becomes available to support them.
In addition to these emergencies, thousands of people and families are living in stressful situations where the potential for harm may be imminent. Caregivers may be in a position where they are no longer in the emotional or physical condition to care for a person with developmental disability’s basic needs. Yet because of the financial situation of DDD services, these caregivers have no option except to continue to provide the daily care their loved ones require, hoping against all reason that someday the needed services will be available.
Until then, organizations across the state such as our local Community Connections continue to help people and their families advocate for an end to the waiting. As the Colorado prioritizes its limited resources, the needs of these families must be heard. Because only a minority of people and families has the time, energy, resources or capacity to advocate effectively, it is up to their friends, neighbors and concerned community members to strive to correct the situation that leaves the needs of so many unmet.
Tara Kiene is director of case management with Community Connections Inc.