You asked for a description of state programs that can help children with cerebral palsy and their families. You also wanted to know the outcome of the long-term care demonstration project established by PA 97-142.

SUMMARY

Cerebral palsy is a group of disorders that affect a person's ability to move and maintain balance and posture. Cerebral palsy occurs when the areas of the brain that control movement and posture do not develop correctly or are damaged. Early signs usually appear before age three. People with cerebral palsy may have difficulty walking and performing fine motor tasks such as writing or using scissors. Many have other conditions that require treatment including mental retardation; learning disabilities; seizures; and vision, hearing, and speech problems. There is no cure for cerebral palsy; treatment includes medication; braces; and physical, occupational, and speech therapy.

Families of children with cerebral palsy often incur high health care expenses, some, but not all, of which are covered by insurance. Some children may need medical and other special equipment. Their families also may need childcare, respite care, and other supportive services.

The state provides various assistance programs for families of children with cerebral palsy and other chronic disabilities. These include access to basic and specialized health insurance, which it subsidizes for low-income families; grants to help pay expenses associated with the child's disability; developmental services; and child care referral.

PA 97-142 (as amended by PA 97-2, June Special Session) required the Social Services Department (DSS) to establish a demonstration project for specialized long-term care for chronically disabled, dependent patients. Eligible individuals had to have traumatic head, brain, or spinal cord injuries and either (1) depend on a ventilator or (2) suffer severe neurological disorders such as cerebral palsy, multiple sclerosis, or similar chronic conditions. The act laid out requirements for the project and required DSS to seek proposals from nursing homes, chronic disease hospitals, and acute care hospitals.

The project began in 2001 today operate in special 30-bed units in Bristol Subacute Center (a nursing home) and Cedar Lane Rehabilitation Center in Waterbury. They serve primarily ventilator-dependent patients with intensive respiratory disorders.

HEALTH INSURANCE

HUSKY A & B

Lower income families that do not have health insurance coverage through an employer can obtain coverage for their children through the state's HUSKY program, which DSS administers. Basic HUSKY insurance is divided in two parts: HUSKY A for children (and in some cases, their parents) in families with incomes under 185% of the federal poverty level (FPL, $39,220 for a family of four) and HUSKY B for children in families with incomes up to 300% of FPL (up to $63,600 for a four-member family). HUSKY A families pay no premiums or co-insurance; premiums and co-insurance for HUSKY B families vary depending on their income. Families with incomes over 300% of FPL can purchase HUSKY B coverage by paying the group premium rate, which currently ranges from $158 to $230 monthly per child, and some co-payments.

HUSKY A is a Medicaid managed care plan that provides extensive federally mandated benefits. It covers all medical goods and services identified under federal early and periodic screening, diagnosis, and treatment guidelines. While HUSKY B does not have to meet these federal mandates, it provides similar benefits. For children with chronic disorders such as cerebral palsy, these can include 100% payment for durable medical equipment; short-term physical, speech, and occupational therapy; and home health care (some benefits require prior authorization). More information on HUSKY is available at http://www.huskyhealth.com/welcome.htm.

HUSKY Plus & Children with Special Health Care Needs Supplements

Some expenses arising from a child's chronic condition, like cerebral palsy, may not be covered under an insurance plan or meet the insurer's definition of “medically necessary.” These can range from diapers for an incontinent adolescent to a wheelchair van for transporting the child.

The state offers two “supplementary” plans for such children in families that are eligible for HUSKY A or B. HUSKY Plus (Physical or Behavioral), which DSS administers, is available to families eligible for HUSKY B. The Children with Special Health Care Needs (CSHCN) program is for families eligible for HUSKY A. Services for both programs are provided through two regional centers: the Connecticut Children's Medical Center's Center for Children with Special Health Care Needs and the Yale Center for Children with Special Health Care Needs.

HUSKY PLUS Physical benefits include payment for certain types of services and equipment not covered by the HUSKY B plan or any other community resource. HUSKY PLUS has no deductibles, no co-pays, and no lifetime benefit maximums. Its benefits include multidisciplinary care support, durable medical equipment and wheelchairs, medical and surgical supplies, long-term occupational and physical therapy, and skilled nursing and home health aide services. More information on HUSKY Plus is available at http://www.huskyhealth.com/guide.htm.

The Public Health Department (DPH) administers the CSHCN program using federal Maternal and Child Health Services Block Grant (Title V) funds. The program provides care coordination, advocacy, family support, and transition services to adult care. Within available funds, families may also qualify for respite support (up to $500 a year) and payment for certain durable medical equipment and other services and goods.

PA 06-188 permitted DPH, in conjunction with the HUSKY A managed care plans, to establish a medical home pilot program for the CSHCN program. The program currently serves over 4,300 children. A medical home insures that each participating child has a primary care provider that provides continuous, comprehensive health care services. The provider, typically through a staff care coordinator, can help children

and their families access and coordinate special care, educational services, out-of-home care, family support, and other public and private community services.

Katie Beckett Waiver

This federal program allows DSS to provide Medicaid coverage to a child with complex medical conditions whose family income is too high to otherwise qualify for HUSKY A. Under the waiver, the parents' income is not counted toward determining Medicaid eligibility. The child must meet DSS criteria for nursing home care, and the cost of services the child receives in the community cannot exceed a nursing home's cost.

The federal government authorizes DSS to help 200 people through this waiver, but current state funding can support only 180. Over 100 people are currently on a waiting list.

FAMILY SUPPORT

Home- and Community-Based Services

A child with cerebral palsy who also has mental retardation could obtain services at home and in the community under the Department of Developmental Services' (DDS) Individual and Family Supports Medicaid waiver program. The services available under this waiver program include family training, home and vehicle modifications, specialized equipment and supplies, transportation, respite care, and nutritional consultations. DDS staff helps participants develop a service plan based on their needs and a budget to pay for those services. Families may obtain the services through authorized vendors or can directly hire providers.

There is a waiting list for participation. Enrollment is based on how much an individual needs services, the level of support he or she has without the waiver, and the availability of resources. Adults on the waiting list usually receive priority. More information is available at http://www.ct.gov/dds/lib/dds/waiver/ifs_hcbswaiver.pdf.

Family Support Grants

DSS can provide a grant of up to $250 a month to help meet the extraordinary expenses a family incurs in caring for a child with a developmental disability other than mental retardation. A family can use the grant for ongoing costs such as medical expenses that are not

covered by insurance, transportation, and special equipment. The program's capacity is limited by state funding. Currently DSS can serve 25 families and has 36 families on a waiting list.

The child must be between five and 18 years old and have a chronic disability attributable to a physical or mental impairment (or a combination of the two) that results in substantial functional limitations in three or more areas of major life activity such as mobility, self-care, capacity for independent living, and receptive and expressive language. The family's gross income (less disability-related expenses) must be less than 140% of the state median family income.

DDS also provides family supports grants. The grants usually average $600 to $1.000 a year, but they can be as high as $5,000. Families can use the grants to purchase respite care; in-home supports; nursing, medical, or clinical supports; temporary assistance or crisis support; skill and family training; recreation; transportation; and support coordination.

DEVELOPMENTAL SERVICES

Birth-to-Three Program

This program serves children up to age three who (1) have a diagnosed medical condition that has a high probability of resulting in a developmental delay or (2) show significant delays in development. A diagnosis of cerebral palsy automatically makes a child eligible for services. The services include assistive technology devices; family training, counseling and home visits; physical and occupational therapy; nutrition services; and transportation and health services the child needs to receive or benefit from other program services. Under Connecticut law, individual and group health insurance plans must cover up to $3,200 per year for such medically necessary early intervention services.

DDS administers the program; nonprofit agencies provide the services. Parents with annual incomes over $45,000 pay a monthly fee for services based on a sliding scale; those with lower incomes pay nothing.

CHILD CARE

DSS supports the United Way of Connecticut's 2-1-1 Child Care Infoline, a free, confidential referral telephone service that helps parents find available childcare. Infoline childcare referral specialists help parents of children with cerebral palsy locate providers that have experience with such children and access other resources, such as family advocates. It reports having 121 providers in its database, including day care centers, family day care homes, nursery schools, and camps, with such experience. More information on Infoline childcare services is available at http://www.211childcare.org/.

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