Intervention Affects Families Quality of Life
FPG Child Development Institute, University of North Carolina, Chapel
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.
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
learn, and develop? Most parents knew how to care for their child's
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
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
life? Most parents rated their quality of life as excellent, very
good, or good.
Did early intervention help enhance an optimistic view of the
future? Almost all parents expected their family's future situation
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
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.
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
*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
These findings also underline the key roles that pediatricians and
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
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