Connecticut's Services for Children with
Special Health Care Needs
a report from the Office of the Child Advocate
released May 2001
For the purposes of this report, “children with special health care needs” are children who have medically complex conditions and developmental disabilities. These children are significantly limited in their ability to function in areas of major life activity such as eating, moving and self-expression. They are dependent upon others or technology for many or all aspects of their daily lives.
In 1998 and 1999, the Child Advocate received several complaints about children with special health care needs “growing up” in inappropriate institutional settings. Historically, children with special health care needs were commonly sent to live in institutions. Over the last several decades, research has shown that all children grow best in home-like environments and, accordingly, we have strived to keep children in communities. The communities, however, have lacked, and continue to lack, the capacity to fully provide the special care they need. Further, this population of children is expected to grow considerably in coming years due to advancements in neonatal care and improved survival rates for complex pediatric conditions.
The Child Advocate decided to undertake an in-depth investigation of our state’s system of caring for these children. Upon review, the Child Advocate discovered that systemic inadequacies are alarmingly apparent across agencies and programs.
The system of services for children with special health care needs is fragmented, confusing, inaccessible and inadequate.
No single state agency exercises principal responsibility for coordinating the delivery of services to children with special health care needs and their families. Multiple agencies provide multiple programs that are not coordinated and between which exist significant gaps in service.
A lack of data hinders the agencies’ ability to develop programs and services to meet the children’s needs. The agencies do not collect uniform data to determine the number and service needs of children with special health care needs.
There is a persistent, critical shortage of the community and home-based services necessary to support children in their homes. State resources are disproportionately expended to fund out-of-home placements.
Failure to aid families with the care of children at home threatens the safety of children and families, increases risk of abuse and neglect, and leads to an increased rate of out-of-home placement.
When out-of-home placement is necessary there is an alarming inadequacy of appropriate residential options designed to meet these children’s complex needs in a least restrictive environment.
For a lengthier description of the report’s findings, see page 4 of the full report.
Summary of Recommendations
DMR should serve as the lead agency to coordinate services and programs. DMR has a demonstrated expertise in serving individuals with disabilities and has shown commitment to self-determination and community-based models of support.
The affected state agencies should develop a plan to pool state funds for coordinated and flexible use.
The comprehensive plan for coordinated expenditure and delivery of services should include the following components:
- a single point of entry to the system;
- a system-of-care model for delivery of services;
- coordination of expenditure of funds by the lead agency;
- identification of need for and development of appropriate,
least restrictive residential placements.
The lead agency should collect uniform data to determine the number and characteristics of the population.
The lead agency should develop uniform standards of care and oversight of services.
The lead agency should educate families, communities and providers about programs and services.
A task force should develop strategies to alleviate the shortage of pediatric providers.
The state should expand health care coverage for children with special health care needs.
For a full description of the report’s recommendations, see pages 31-33 of the full report.