Early Intervention Affects Families Quality of Life
FPG Child Development Institute, University of North Carolina, Chapel Hill

Supports for families of young children with disabilities, as provided by Part C of the Individuals with Disabilities Education Act are vital, according to a study that assessed family outcomes at the end of early intervention near their child's third birthday.

The Study: Questions & Answers

A nationally representative sample of over 2500 parents in 20 states completed a 40-minute telephone interview on or near their child's third birthday. Five broad questions were asked -

1. Did early intervention enable the family to help their child grow,
learn, and develop? Most parents knew how to care for their child's basic
needs, such as feeding, bathing, and dressing. They noted that they could help their child learn and develop. However, more than one-third indicated that they had a difficult time figuring out what to do about their child's behavior.

2. Did early intervention enhance the family's perceived ability to
work with professionals and advocate for services? Most parents
said that they knew how to work with professionals and advocate for services, and what to do if they did not feel their child was receiving needed services.

3. Did early intervention assist the family in building a strong
support system? Most parents agreed that they had friends or relatives
they could turn to for support or help in dealing with challenges related to their child's special needs. The majority said their ability to work and play together as a family was fairly normal, though their child had special needs. But more than one-third had little chance to participate in community activities, such as religious, school, or social events.

4. Did early intervention enhance the family's perceived quality of
life? Most parents rated their quality of life as excellent, very good, or good.

5. Did early intervention help enhance an optimistic view of the
future? Almost all parents expected their family's future situation to be
excellent, very good, or good.

In addition to answering these questions, parents weighed how the help and information from intervention have affected their family. Most parents rated their families as better off, with a very small percentage reporting that their family was about the same or worse off.

Room for Improvement:

At the end of early intervention, families of infants and toddlers with disabilities generally describe themselves as competent and confident in their capacity to support their child, work with professionals, and gain access to formal and informal supports.

These findings offer evidence that Part C programs have supported most families in their caregiving responsibilities. The article also suggests areas for improvement:

*More specialized help for families of children with behavior problems
*Expanded efforts to help families gain access to community support systems
*More concerted efforts to ensure that early intervention is equally accessible and effective for families from diverse cultures
* More integration of pediatric health care with early intervention, particularly for children who have special health needs in addition to disability.

These findings also underline the key roles that pediatricians and other
professionals play in working with families to identify children who need and might qualify for early intervention. Early referral could result in more optimal outcomes for these children and their families.

Source: FPG Child Development Institute at UNC Chapel Hill.
Director Don Bailey, Ph.D., with FPG Investigators Anita Scarborough, Ph.D., and Lauren Nelson, Ph.D., co-authored the article, "Thirty-Six-Month Outcomes for Families of Children with Disabilities Participating in Early Intervention," published in the December 2005 edition of Pediatrics.