Family Support Activities Contribute to the Health of Families of Children with Disabilities

Within the Head Start community, it is understood that parents of children with disabilities are especially likely to have experiences that put their own health and wellness at risk. New Head Start program staff and parents will find this Head Start Bulletin article a good orientation to how family support activities are often particularly critical to enhancing parenting capacity and family well-being.

The following is an excerpt from...
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by Jim O’Brien

Head Start Disabilities Services Offer Family Support
Parents Of Children With Disabilities
Supporting Maria’s Family
A Relationship of Trust and Respect
Assess How Your Program Promotes Family Health & Wellness
Training and Information Centers and Community Groups

IS THERE A ROLE FOR HEAD START DISABILITIES SERVICES in promoting adult health and wellness? The answer is a resounding YES. Although the disabilities services usually target children, they can also support adults’ well-being. In coordination with a Head Start program’s health promotion and prevention efforts, disabilities services activities may focus on maternal health before, during, and after pregnancy as a way to reduce the incidence of childhood disability. Disabilities services can promote parent education, community partnerships, and advocacy activities, including the reduction of developmental risks from exposure to environmental toxins such as lead poisoning and the harmful effects of alcohol, smoking, and drugs. Working with parents and community partners to address these concerns should be part of a comprehensive health education effort in every Head Start program.

But there is more that falls under the umbrella of disabilities services. A core Head Start activity is broadly described as “family support.” It can make a steady and strong contribution to the wellness of families of children with disabilities. This effort has been a part of the Head Start model from the beginning and is reflected throughout the Head Start Program Performance Standards. While family support activities contribute to the development of children in all the families Head Start serves, research suggests that families of children with disabilities may benefit even more.

Why is this? Parents of children with disabilities are more likely to have experiences that can put their own health and wellness at risk. These experiences include increased isolation, marital conflict, financial hardships, time and energy demands, and a persistent feeling that they are being ineffective in meeting their child’s needs. Family support activities are often critical to the family’s well-being and the parents’ capacity to parent.

My first lesson on Head Start’s contribution to supporting families of children with disabilities came several years ago. I was a psychologist in a program serving children with developmental disabilities. I often had the responsibility of presenting the assessment findings of the interdisciplinary team and its recommendations at Individualized Education Program (IEP) meetings in the schools. One such meeting was scheduled for Maria, a five-year-old girl with multiple disabilities who would be entering kindergarten that fall. A few weeks before that meeting, I had met Maria, her parents, and a coordinator from the Head Start program she attended. They had traveled almost 100 miles from home to our university-based center for multiple evaluations, including neurological and orthopedic exams recommended by her pediatrician and developmental assessments requested by the local school system. The results would help in planning the most appropriate services for Maria’s kindergarten year.

The afternoon of the IEP meeting, I arrived to find Maria’s parents and the Head Start disabilities services coordinator seated together on a bench outside the local elementary school. They had arranged to meet early to prepare for the meeting. The Head Start program had arranged child care that afternoon for Maria and her younger brother so that both parents could attend. As the meeting began, I soon recognized that these parents were unusually well-prepared and confident in their roles as advocates for their daughter. The Head Start coordinator offered support and suggestions, but she followed the parents’ lead. The school staff and Head Start coordinator shared reassuring stories of children with disabilities (and their parents) who had made successful transitions from Head Start to kindergarten. I was pleased to learn that the kindergarten teacher knew Maria and her parents from her visit to the Head Start classroom; she made specific suggestions based on those observations and discussions with the Head Start teachers. It was clear that Maria’s transition was on a sound foundation and that her parents’ involvement in her new school would be substantial. After the meeting, the Head Start coordinator congratulated the parents on their performance and jokingly warned them that she would be calling for their help in supporting other Head Start parents of children with disabilities.

Looking back, I now know that this Head Start coordinator’s wonderful support of Maria’s family was a required feature of the Head Start model of parent involvement. I also understand that the parents’ “performance” in that IEP meeting was the product of months of communication between them and the Head Start staff. It was grounded in a relationship of trust and mutual respect. And, I realize that the partnership between the Head Start program and the school system, built over several Family Support years, paid a real dividend for Maria and her family as they began the new school year.

As your program continuously assesses how it promotes the health and wellness of the families it serves, consider the resources, training, and support provided families of children with disabilities. Learn more from your Head Start families about the supports they value most and those they find most lacking. Contact the Parent Centers for your state to identify the parent-to-parent support organizations available in your community or collaborate with local parents and community partners to start a new parent-to-parent organization. When the health and well-being of parents are promoted, children and families reap the benefits.

Jim O’Brien is a Program Specialist in the Health and Disabilities Services Branch at the Head Start Bureau

See also:
     Training and Information Centers and Community Groups
     Adult Health, Head Start Bulletin #75 [PDF, 6.48KB]

"Family Support Activities Contribute to the Health of Families of Children with Disabilities." O'Brien, Jim. Adult Health 2003. Head Start Bulletin #75. HHS/ACF/ACYF/HSB. 2003. English.

Last Reviewed: December 2009

Last Updated: October 6, 2014