Help for families who have a child with a disability can be broadly divided into three categories: emotional support, information, and federal government programs. Emotional support for family members of children with mild disabilities begins with the immediate family, branches out to grandfamily members and other relatives, and continues with friends and neighbors. Professional support agencies complement "grassroot" networks by providing information and services that train families to help themselves. The stronger their support system, the more capable the family will be in coping with the daily stresses of raising a child with a disability.
Federal programs are primarily targeted at low-income families. Poverty continues to play a significant role in the development of mild disabilities, particularly mild mental retardation and behavior disorders. Children without adequate nutrition and health care are at-risk populations. Environmental threats to normal development include heavy-metal poisoning, child abuse, child neglect, community violence, lack of proper educational experiences at home, and drug abuse. Government programs, when funded properly, can prevent and/or remediate medical and environmental conditions that contribute to mild disabilities.
Emotional Support
Support groups help family members cope with isolation. When family members have an opportunity to discuss their problems with other family members of children with disabilities, they learn they are not alone. Over the years, many self-help, support groups for family members have sprung up in local communities. Sometimes leadership for these groups comes from local professionals; more often family members themselves are the organizers.
Support groups provide family members with an emotional lifeline as they discover that others share their experiences. When family members talk to family members, a sense of comradeship supplants feelings of loneliness and isolation. The Federation of Families for Children's 'dental Health, for example, has assisted many family-run organizations in getting started (Bullock & Gable, 1997). Support groups also help family members learn how to use their int1uence to get the best educational services for their children. Many school systems haw family member advisory councils. These advocacy groups are comprised of family members with disabled children and representatives from the local educational agency. They meet on a regular basis to discuss issues pertaining to delivery of special education services in their community. How much influence a family member advisory council has is largely determined by the political activism of member family members. Some typical activities of a family member advisory council include regular review of special education policy in their school system, dissemination of information to family members of special needs children, and the writing of grants to improve educational services for children with disabilities.
Information
Recent federal legislation has enabled family member-organized groups to develop a national networking system. A federal grant program to support organized family member efforts to provide information and training is the Federation for Children with Special Needs (www.fcsn.org). The purpose of the federation is to disseminate information regarding special needs to family members and families.
The National Information Center for Children and Youth with Disabilities (NICHCY, www.nichcy.org) provides educational information and technical assistance to family members, advocates, and professionals. NICHCY maintains a collection of resource publications and fact sheets that help family members locate assistance in their local communities. Since 1922, the Council for Exceptional Children (CEC, www.cec.sped.org) has provided both family members and professionals with support services, including national and regional conferences, journals, and political activism on behalf of children with disabilities. While CEC provides support activities for all types of disabling conditions, other national organizations provide support services for families of children with specific disabilities. Chapters of the Learning Disabilities Association (www.ldanatl.org) and Association for Retarded Citizens exist throughout the country (www.thearc.org). These organizations provide family members with information on recent developments in research and teaching children with specific impairments. Family members or educators who wish to contact any of these organizations can get the necessary information from websites and state department of education offices.
Many organizations and agencies are eager to help support families, yet each year countless family members struggle alone, unaware of the support network that is available to help them. By providing family members with names of local and regional support agencies, teachers can help ensure that their classroom efforts are complemented by help outside of school. Mild disabilities are more than just a school problem; learning disabilities, mild emotional disorders are family problems. When families are supported at home, children with special needs have a better opportunity to overcome their intellectual disability in school and in the community.
Government Programs
Because federal grant funding is cyclical and subject to legislative approval, changes in funding priorities and appropriations are frequent. Updated information regarding federal assistance to enhance families involvement in schooling can be obtained through the U.S. Department of Education website at www.ed.gov. The following is a brief list of important federal assistance programs.
WIC (www.fns.usda.gov). The Special Food Supplemental Program for Women, Infants, and Children (WIC) is a federal grant program for which Congress authorizes a specific amount of funds each year. A family of four that earns $31,593.00 or less annually meets WIC assistance guidelines. The WIC target population is low-income, nutritionally at-risk women and children. Specifically included are:
- Pregnant women (through pregnancy and up to 6 weeks after birth or after pregnancy ends): one in four new mothers participates in WIC
- Breast-feeding women (up to infant's 1st birthday)
- Non-breast-feeding postpartum women (up to 6 months after the birth of an infant or after pregnancy ends)
- Infants (up to 1st birthday): WIC serves 45 percent of all infants born in the United States
- Children up to their 5th birthday
WIC operates through 2.000 local agencies in 10,000 clinic sites and in 50 state health departments. \nC pro\ides nutritional assistance to pregnant women and children through supplemental nutritious foods purchased at retailers with vouchers, nutrition education and counseling in WIC clinics. and screening and referrals to other health, welfare, and social services.
CHIP (www.cms.nhs.gov/home/schip.asp). In 1997, Congress enacted the Children's Health Insurance Program (CHIP). Eligible working families are those whose income is too high to qualify for Medicaid, but too low to afford private coverage. More than 90 percent of eligible children live in working families. In most states, children age 18 and younger in a working family of four earning up to $34,100 annually would qualify. The Children's Defense Fund estimated that in 1999, 10.8 million children under 18 lacked health insurance. Of the uninsured. 4.4 million were white, 3.4 million Hispanic, and 2. I million were African American. Compared with the insured, children without health insurance are four times more likely to have an un met medical problem, three times as likely to have an unmet dental need, and almost twice as likely to have an unmet vision problem. Lack of health insurance is a leading contributor to mild mental retardation and behavior disorders.
EPSDT (www.hrsa.gov/epsdt/default.htm). Medicaid and Early Periodic Screening, Diagnosis and Treatment (EPSDT) provide health services to families who are unable to afford health insurance. Prenatal care, increased birth weight, decreased neonatal deaths, and fewer abnormalities are some of the benefits of EPSDT for poor children. Screening for lead poisoning is a required component of EPSDT treatment for all Medicaid-eligible children from 24 to 72 months. Childhood immunization programs, which prevent measles, rubella, mumps, polio, diphtheria, tetanus, and pertussis, are funded. As a result of EPSDT, in 1997, an estimated 37,177,000 recipients including low-income persons over 65, disabled, low-income children, and pregnant women received medical assistance (Federal Domestic Assistance Catalog, 1997).
Head Start (www.nhsa.org). Head Start is a federally funded program that provides preschoolers with a range of crucial services. The Head Start educational programs help youngsters learn school readiness skills, thus increasing their chances for academic success when they enter public school. Nutrition and medical screening, including EPSDT and dental checkups, are components of Head Start. Family member involvement is built into every Head Start program. Family members are encouraged to attend family membering workshops on such topics as nutrition and developmental play at home. Some Head Start programs are home based. Head Start teachers visit youngsters' homes and demonstrate early childhood activities for family members.
The most notable accomplishment of a Head Start preschool was attributed to the Perry Preschool Program in Ypsilanti, Michigan. By age 19, students who had attended the Perry program "were more likely to have finished high school, were dramatically less likely to have committed a crime, were less likely to be on welfare, and were earning more money" when compared to peers who had not attended the Perry program (Stein, Leinhardt, & Bickel. 1989. 149). Head Start children have demonstrated better school readiness skills, higher verbal achievement, and enhanced social competence when compared to other low-income children (www.nhsa.org).
Federal programs make significant contributions to strengthening the ability of family members to improve the health and education of their children. Only the federal government has the financial and political leadership required to make children a national priority. In order to provide for the needs of youth, a new vision of community is needed. A community is a network of people working together toward common goals. This new vision would promote community organizations as extended families. Services such as youth clubs, athletic organizations, schools, mental health clinics, and family member resource centers can help family members and children. All of these ventures are woefully underfunded.
Although the country can't turn back the clock to the neighborhood school memories of James Corner, there are many paths to the goal of providing for the nation's children. WIC, CHIP, and EPSDT are based on the premise that children need to be healthy to learn. Head Start integrates health services, family member involvement, and education to help at-risk children succeed in school. Innovative programs and family member involvement provide a decision-making role for family members in schools, establish support for family members to assist children to learn at home, and enhance family member-teacher communication.
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