Family Support
INCLUDEPICTURE "C:\\Documents and Settings\\moneill\\My Documents\\My Pictures\\logo.gif" \* MERGEFORMATINET
CONNECTICUTS SERVICES FOR
CHILDREN WITH
SPECIAL HEALTH CARE NEEDS
A REPORT BY THE
CHILD ADVOCATE
INCLUDEPICTURE "http://www.cga.state.ct.us/hdo/Sealcolr.gif" \* MERGEFORMATINET INCLUDEPICTURE "C:\\Documents and Settings\\moneill\\My Documents\\My Pictures\\seal_bback.jpg" \* MERGEFORMATINET
INCLUDEPICTURE "http://www.cga.state.ct.us/hdo/Sealcolr.gif" \* MERGEFORMATINET
Jeanne Milstein
Child Advocate
May 2001
Table of Contents
Explanation of Terms3
Vignette: Michael, a Child with Special Health Care Needs3
Summary of Findings4
Mission of the Office of the Child Advocate5
Background5
Defining the Population6
Methodology and Limitations6
A Note from the Child Advocate7
Children with Special Health Care Needs:
What Do They Need to Live Safely in the Community?8
Description: How Connecticut Supports Children and their Families9
Department of Mental Retardation9
Department of Education9
Department of Social Services9
Department of Public Health10
Department of Children and Families10
Family Supports10
Financing Care11
Access to Services14
Developmental and Educational Services16
Coordinating Services17
Respite20
Out-of-Home Placement21
Community Training Homes (CTH) and Foster Care22
Group Care Settings24
Institutional/Semi-Institutional Settings26
Residential Educational Placements27
Reunification: Children Returning to Families28
Conclusion28
Recommendations31
Recent Initiatives34
Explanation of Terms
For the purposes of this report, children with special health care needs are children who have medically complex conditions and developmental disabilities.
Medically complex conditions means a combination of chronic physical conditions, illnesses, or other medically related factors that significantly impact an individuals health and manner of living. Medically complex conditions cause reliance upon technological, pharmacological, and other therapeutic interventions to sustain life.
Developmental disabilities are severe, chronic disabilities manifested before the age of 22 that are typically lifelong in duration. Developmental disabilities result in substantial functional limitations in areas of major life activity such as self care, receptive and expressive learning, mobility, self-direction, independent living, or economic self-sufficiency. An individual with developmental disability will need services, supports, or other assistance that is of lifelong or extended duration and is individually planned and coordinated.
Michael, a child with special health care needs
(i.e., medically complex conditions and developmental disabilities)
Michael is a 12-year-old boy who lives at home with his mother and father. He has a large record collection and listens to music whenever he can. Like most children his age, he likes to stay up late at night and has trouble waking up in the morning. Once awake however, he loves to go to school and be with other children. He smiles and giggles from the motion of the car on the way.
Michael has cerebral palsy, a seizure disorder, and severe mental retardation. He does not see, talk, or swallow food. He cannot walk or lift himself. His mother feeds him through a gastric tube, which she also uses to give him medications. The medications control his seizures, relax his muscles and prevent him from becoming constipated. She bathes him, changes his diapers, changes his position frequently so his skin doesnt develop sores, and lifts him from his hospital bed in the living room to his wheelchair. Michael is very small for his age, he weighs only about 80 pounds, but he is difficult to lift and carry because of the spastic movements of his arms and legs caused by the cerebral palsy.
Michael receives physical therapy to strengthen and stretch his arms and legs. He receives chest physiotherapy to clear his lungs and keep mucous from building up. Some of these services he receives at school along with instruction from a special education teacher who is teaching him some Sign Language. He can sign to his mother the word for music.
Findings
Children with special health care needs require a full range of supports to accomplish daily living, including physical care, medical treatment, assisted movement and communication, education and recreation. Their families require assistance coordinating, financing and providing both medical and nonmedical care, as well as information and emotional support.
No single state agency exercises principal responsibility for coordinating the delivery of services to children with special health care needs and their families. The resulting system of services is fragmented, confusing, inaccessible and inadequate.
No single entry point exists to access services. Each program routinely imposes a separate extensive application process. There is no central source of information about available services and programs.
No health insurance program covers the full cost of caring for children with special health care needs. Supplemental waivers and grant programs, designed to meet needs unmet by health insurance, are extremely limited in what they cover as well as their capacity to support large numbers of children, and inadequate state funds have been appropriated to expand them.
A severe shortage exists for every type of trained pediatric provider necessary to assist families caring for children with special health care needs in their homes and communities.
Respite is one of the most frequently requested services by families caring for children with special health care needs. It is also the service that is the least adequately available.
Development of services and supports for all children with special health care needs is hindered by a lack of quantifiable information about incidence and characteristics of the population.
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 residential options designed to meet these childrens complex needs in a least restrictive, developmentally appropriate environment.
Mission of the Office of the Child Advocate
The mission of the Office of the Child Advocate (OCA) is to oversee the protection and care of children in Connecticut and to advocate for their well being. OCAs broad statutory mandate includes the obligation to review and investigate complaints concerning the delivery of services to children by state agencies and to recommend changes in state policies concerning children. In addition, OCA is specifically mandated to review the number of children with special needs in foster care or permanent care facilities; to periodically review the facilities and procedures of any and all institutions or residences, public or private, where a juvenile has been placed by an agency or department; and to recommend changes in the policies and procedures for placement of those children. (Conn. Gen. Stat. Sec. 46a-13k et seq.)
Background
Beginning in the 1970s, Connecticut experienced a profound shift in its approach to caring for children with complex medical conditions and developmental disabilities. Until that point, those whose families were unable to support them at home were commonly sent to live in institutions. By the 1970s, the states experience and medical research revealed that institutional living was not developmentally appropriate and failed to provide an acceptable quality of life. We began to move children out of institutions and into the community. The community, however, was not prepared to provide the special care they need.
In October 1998, the Office of the Child Advocate (OCA) was contacted by staff at a sub-acute, rehabilitative care facility and made aware of several children with complex medical conditions and developmental disabilities residing there. The staff were concerned that though the children had required hospitalization at one time, they had progressed to the point of no longer needing that level of care. Yet, they remained at the facility for lack of alternative places to go. There were no community supports to meet the childrens care needs at home and there were no community residential settings that could accommodate them either. The children were growing up in a sub-acute institutional setting. Other reports prompted OCA to investigate the living conditions of 17 children with complex medical conditions and developmental disabilities placed in one DCF-licensed permanent family residence.
Upon investigation, OCA learned that extraordinarily lengthy hospitalizations and overcrowding in specialized foster homes were, indeed, the result of limited availability of placements and support resources to care for children with complex medical conditions and developmental disabilities in the community. Despite Connecticuts commitment to deinstitutionalization, there is a persistent and critical shortage of community resources and placement options.
Systemic inadequacies across agencies and programs serving children with complex medical conditions and developmental disabilities are alarmingly apparent. Further, we
