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Early Family Services and Supports in NH
By: Jamie Stephenson originally in 2003, NH Challenge Staff Writer (Edits by Jack Krumm for timeline)
New Hampshirefs adoption of regulations for Family Centered Supports and Services in the early 1990fs hallmarked the end of a process that began almost 20 years earlier and the beginning of a brighter future for infants with disabilities in NH.@
Family Centered Early Supports and Services (FCESS), also known as early intervention (EI) or early supports and services (ESS), is the name for the statewide program that looks after our tiniest citizens with disabilities.
Staffed by dedicated, skilled professionals, early intervention centers provided direct educational and therapeutic services to eligible infants in community settings and support to families learning how to raise a child with a disability.
The system was designed to be smooth and stress free for the family and cost effective for the state. Investing in early intervention for infants with disabilities has been proven to reduce some childrenfs need for future services.
The success of New Hampshirefs early intervention program can be attributed, in part, to the collaboration between the Department of Health and Human Services and the Department of Education. Those two important, independent state agencies came together to create a service system that utilizes the expertise of educators and human service providers to implement a unique part of the federal special education law.
The federal government began to address infant health and development in early twentieth century with the establishment of The Childrenfs Bureau in 1912. That agency focused on children with disabilities and serious illness. The Social Security Act of 1935 included Maternal and Child Health Services and the 1965 amendments added the Early and Periodic Screening Diagnosis and Treatment (EPSDT) program as part of the newly established Medicaid services for children living in poverty.
The value of early childhood education was already well documented in 1872 when the first public kindergarten opened in the United States. In the early twentieth century, nursery schools were established to offset the effects of the deprived environments of urban children living in poverty.
The preschool movement gained more momentum through government funded initiatives during the Great Depression of the 1930s and World War II in the 1940s. Many women were drawn into the labor force during those decades and nursery schools and kindergartens supported the working mothers.
Two decades later, in 1965, as part of his "War on Poverty" President Johnson established Heat Start, the largest early childhood program funded by the federal government. Head Start began serving low income 4 and 5 year olds but the outcomes were so positive that it was later expanded to include infants and toddlers.
A longitudinal RAND study demonstrated gains in I.Q., higher achievement in elementary school, lower incarceration rates, and fewer referrals to special education in children who have attended Head Start programs.
New Hampshire showed its commitment to serve infants and toddlers beginning in 1968 by supporting the creation of parent led cooperatives and service centers for children with disabilities. In 1975, RSA 171-A established a comprehensive statewide service system for citizens with disabilities that included early intervention services for infants and toddlers. The Area Agency system grew out of this statute and in spite of changes imposed in the early 2000fs it remains the contact point for early intervention services though out the state.
But the initial programs for infants and toddlers were not reaching all the eligible children and there was a question of entitlement. Each Area Agency created its own program for clients under three with a model sometimes based on the adult service system that is not particularly family oriented.
There was also the problem of waiting periods for evaluation and services. Early childhood is a unique time of learning and development that canft be revisited years or even months later. The immediacy of the need for intervention becomes obvious when viewed in this light. Parents and professionals involved with early intervention soon realized the need for an entitlement with short timelines for service after referral.
The 1973 federal special education law did not mandate services to infants and toddlers but, rather, offered funds for pilot programs in early intervention for children with disabilities. The Model Infant and Toddler Project in Hanover from 1974-1977 was one of these.
The Federal mandate for special education services for children under five (P.L. 99-457) was added to the 1986 reauthorization of the Education of All Handicapped Children Act (now called Individuals with Disabilities Education Act (I.D.E.A.)). Part H of P.L. 99-457 created funding incentives for states to plan a system of services for children birth through two.
Congress charged the U.S. Department of Education Office of Special Education Programs (OSEP) with responsibility for guiding each state through the process of creating an early intervention service system within the framework provided by the law.
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Unlike their school age peers, infants with disabilities require a service plan that meets the needs of the family in the home and provides support to the family caregivers as well as services to the infant. Studies have shown that direct therapy provided to the infant at home will be continued by the caregivers, thus compounding the benefit to the child. Instead of an Individualized Education Program (IEP) infants and toddlers require an Individualized Family Service Plan (IFSP).
The IFSP needed to include the childfs level of development, the familyfs concerns about the child, the familyfs resources, the goals for the child and family, the services to be provided, the setting for the services, and a plan for transition into preschool services. To accomplish this, early intervention systems had to be interagency and multidisciplinary as well as comprehensive. This requires cooperation and collaboration between professionals from the human service field and education.
New Hampshirefs participation in P.L. 99-457 Part H began in 1989 with Governor John Sununufs executive order creating the Interagency Coordinating Council (ICC) and naming the Department of Education (DoE) lead agency (in 1992 the lead agency changed to DHHS). The Council membership included representatives from DoE; Department of Health and Human Services (DHHS); the Legislature; The Governorfs office; Department of Insurance; Division of Children, Youth, and Families (DCYF); early intervention providers; and parents.
Charged with designing a system of referral, information, service provision, public awareness, personnel preparation and data collection in a family-friendly atmosphere, the Council began a five-year planning period.
During the planning period, the ICC set the framework for the statewide program to serve infants and toddlers with assistance from National Early Childhood Technical Assistance System (NEC*TAS), U.S. Department of Education. In September 1990, the Lake Region Community Health Agency was awarded a grant, entitled Family First; to study risk factors for newborns in New Hampshire and develop a system for family focused infant screening and assessment. The project was expected to collect data that would be used to create eligibility standards for infants and toddlers under Part H. Also, it would serve as a model for community based early screening programs for infants at risk for developmental delay.
In collaboration with Lakes Region General Hospital, Laconia School District, Lakes Region Child Development Program, and Lakes Region Community Services Council, the project began screening all newborns in Region 3 between May 1991 and April 1992. The Family First project assessed each infantfs risk factors (e.g. low birth weight, low Apgar score,) and family demographic information as stated on the birth certificate.
Parents who chose to participate answered a questionnaire that assessed the familyfs risk factors, including parental disability, access to medical providers, chronic illness, social isolation, and concern about their newborn. Families deemed at risk were offered a home visit and all infants were offered an additional screening at 6 months and 12 months.
At each level of screening, eligible infants were referred to early intervention. Of the 487 births, 229 familyfs participated and 4 infants were referred to early intervention. While this number is not surprising, the project leaders believed that eligible infants received services sooner and that all participating families benefited from the information about infant development and community resources.
Like the Family Resource Connection, Family First provided information and referral to all families whether at risk or not.
In 1992, the ICC sponsored a Pediatric Leadership Conference designed to educate medical providers about early intervention and receive their support to improve EI services. Families nominated physicians to attend the two-day conference at the Minary Center on Squam Lake.
The ICC recognized that, after the family, the infantfs doctor is most knowledgeable about the developmental risk factors facing each family and most likely to know when an EI referral is appropriate. Therefore, the 36 physicians attending the conference were encouraged to form connections with the early intervention system and to encourage their colleagues to do the same.@
The impact of this ICC project has continued to this day with increasing physician referrals in all regions, according to the 2003 ICC Annual Report.
Another major pilot program, the Family Resource Project, was sponsored in 1993. Prompted by the existence of waiting lists for services for eligible infants, the ICC chose to fund programs in 5 Regions (Concord, Manchester, Merrimack, Dover and Atkinson) that offered families waiting for services the option of receiving cash assistance to buy supports and services to meet their childfs and familyfs needs.
This proposal was not without controversy. Some opponents argued that families were not equipped to make wise choices; that the children in need of service would not benefit; and it would lead families into dependence on public assistance.
The results of this project proved those concerns to be unfounded. The families made careful, child focused choices when expending funds. 73% of all funds expended went toward therapies and developmental services for the children. In fact, when left to make their own decisions, families chose services that closely replicated those in the existing EI system proving that parentsf and professionalsf viewpoints were not too far apart.
One thing that families in the Project unanimously requested was more information about their childfs disability and about community resources in order to make informed decisions when spending their allotted funds. Families were also very conservative spending project funds, one family offered to share a portion of their funds with other families with unmet needs.
In 1994, a Conference on Infant Mental Health was convened and in 1995 an Infant Mental Health Advisory Committee was formed.
In 1996 the issues of managed care, insurance, and welfare reform predominated along with the pending reauthorization of IDEA where the name Part H was changed to Part C.
In 1997 autism became an issue of interest for the ICC and in 1998 an Autism Coalition was formed.
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