OLR Research Report

January 12, 2007





By: Soncia Coleman, Associate Analyst

Robin Cohen, Principal Research Analyst

Janet Kaminski, Principal Research Analyst

Saul Spigel, Chief Research Analyst


You asked a number of questions about services for children with special health care needs. Specifically, you wanted to know (1) which state agencies serve this population, (2) what the funding sources are for these services, (3) the existing parent advisory committees, and (4) whether state law mandates private insurance coverage for these children.

The Office of the Child Advocate (OCA) issued a report, “Connecticut's Services for Children with Special Health Care Needs,” in May 2001 (copy attached). It describes the state agencies, programs, and funding sources for this population. This report updates that information.

For purposes of this report, children with special health care needs do not include children who need only mental health care services.


During the last five years, the legislature has modified some of the state programs designed to help children with special health care needs. For example, it required parents to pay a portion of their child's Birth-to-Three costs if their income is $45,000 or more, allowed the Department of Public Health (DPH) to establish a medical home pilot program, and increased funding for the Katie Beckett waiver to allow more families to participate.

We identified 10 insurance mandates that we believe directly affect this population. They include coverage for physically handicapped children who lose eligibility for dependent coverage due to age but are still dependent on an insured person for support and minimum coverage for Birth-to-Three services.


Birth to Three Program

Fees. Public Act 03-3, June Special Session required the Department of Mental Retardation (DMR) commissioner to charge parents or guardians whose gross annual income is $45,000 or more for the cost of the Birth-to-Three services their child receives. It also allowed DMR to charge any parent, regardless of income, for services, unless the child is eligible for Medicaid. The law already allowed the commissioner to establish a sliding scale fee schedule for services that considered parents' financial resources.

Insurance. PA 03-3, JSS also revised the coverage for medically necessary early intervention services the law required group and individual health insurance policies to provide as part of an individualized service plan (Birth-to-3 services are provided pursuant to such plans). It changed the annual limit to $3,200 per child from $5,000 per policyholder and set a $9,600 per child aggregate, three-year limit. It specified that coverage was for services provided by qualified personnel (e.g., physicians, psychologists, special education teachers, speech and physical therapists, nurses, social workers) from a child's birth to third birthday.

Birth-to 3 Council. PA 05-256 revised the number of parents and service providers who serve on DMR's Interagency Birth-to-Three Coordinating Council, which helps DMR carry out its lead agency responsibilities. The council is composed of representatives from nine state agencies, two legislators, one person who trains early intervention service providers, a representative from a Head Start agency, and a pediatrician (a total of 14 people), plus six parents and five early intervention service providers. The act replaced the fixed number of (1) parents and (2) service providers with requirements that each group comprise at least 20% of the council's total membership. It also specified that either public or private service providers can serve on the council and removed the requirement that only DMR-approved providers can serve.

Transfer to DMR of Children in Department of Children and Families (DCF) Voluntary Services Program

DCF and DMR entered into an agreement in FY 00 specifying each agency's responsibility for children who are DMR clients but voluntarily placed with DCF for services. The agreement called for DMR to assume financial responsibility for these children after 12 months. Fiscal constraints prevented DMR from meeting this obligation until the FY 06-07 biennial budget transferred funds from DCF to DMR for this purpose.

In FY 06, 124 children were transferred to DMR and 75 in FY 07. DMR expects 60 to 90 new referrals a year. The average annual cost per child is $87,826.

Medical Home

PA 06-188 permits the Department of Public Health commissioner, in consultation with the managed care organizations administering the HUSKY A program, to establish a medical home pilot program in one Connecticut region beginning January 1, 2007. The program is to enhance health outcomes for children, including those with special needs, by ensuring that each child has a primary care physician to provide continuous comprehensive health care services. It must operate within any available federal or private funds the commissioner can raise.

The commissioner, no later than one year after the pilot program starts, must evaluate it for improved health outcomes and any cost efficiencies. He must report to the Public Health and Appropriations committees within 30 days of the evaluation's completion.

Katie Beckett Waiver

In 2000, the legislature authorized the Department of Social Services to provide funding for up to 200 children in the Katie Becket program but did not provide funding to do so. In 2005, the legislature added $1.5 million to the program, bringing the total number of funded slots up to 180.

Special Education

By law, the education commissioner or her designee must appoint a surrogate parent to represent a child (1) whose parents cannot be identified or located or who is a ward of the state and (2) who may require special education. PA 06-18 extended this to include unaccompanied and homeless youth, as defined in federal law.

Although it is not for parents exclusively, the Advisory Council for Special Education, which includes executive and legislative appointees as well as the commissioners of the State Department of Education (SDE), DMR, DCF, and Correction, includes individuals with disabilities or their parents. The council advises the legislature, State Board or Education, and the SDE commissioner. The 2006 General Assembly required the commissioner to appoint additional new members that might be required by the Individuals with Disabilities Education Improvement Act.


Table 1 lists those insurance coverage mandates that would most likely affect the target population.

Table 1. Insurance Mandates for Children with Special Health Care Needs


Mandated Benefit




Mentally or physically handicapped dependent children

When dependent coverage terminates at a certain age, coverage must continue if child is both mentally or physically handicapped and dependent upon insured for support.





Newborns and adopted children

Injury and sickness, including care and treatment of congenital defects and birth abnormalities, for newborns from birth and for adopted children from legal placement for adoption.




At least $3,200 per child annually for medically necessary early invention services, up to $9,600 per child over three years.



Hearing aids for children

Hearing aids for children 12 and under. Coverage may be limited to $1,000 within a 24-month period.



Craniofacial disorders

Medically necessary orthodontic processes and appliances for treatment of craniofacial disorders for people under age 18. Coverage is not required for cosmetic surgery.



Protein modified food and specialized formula

Amino-acid modified and low-protein modified food products when prescribed for the treatment of inherited metabolic diseases and cystic fibrosis. Medically necessary specialized formula for children up to age 8. Food and formula must be administered under the direction of a physician. Coverage for preparations, food products, and formulas must be on the same basis as coverage outpatient prescription drugs.


Comprehensive rehabilitation services

Group health insurance must offer coverage for comprehensive rehabilitation services, including (1) physician services, physical and occupational therapy, nursing care, psychological and audiological services, and speech therapy; (2) social services provided by a social worker; (3) respiratory therapy; (4) prescription drugs and medicines; (5) prosthetic and orthotic devices and; (6) other supplies and services prescribed by a doctor.



Occupational therapy

If policy covers physical therapy, it must provide coverage for occupational therapy.


Preventive pediatric care

Group health insurance coverage must include preventive pediatric care at the following intervals (1) every 2 months from birth to 6 months, (2) every 3 months from 9 to 18 months, and (3) annually from 2 to 6 years of age. Coverage is subject to any policy provisions that apply to other services covered under the policy.

PA 06-131

Children with cancer

Effective October 1, 2006:

Coverage for (1) neuropsychological testing of children diagnosed with cancer after December 31, 1999 and (2) tests a physician orders to assess the extent chemotherapy or radiation treatment has caused the child to have cognitive or developmental delays. Insurers cannot require pre-authorization for the tests.