Research shows that early intervention (birth – age three) improves outcomes for children with autism and other special needs. Two good resources for families are:
- NECTAC (National Early Childhood Technical Assistance Center) with an overview of early intervention, data, and contacts for programs in their state at www.nectac.org.
- ECO (Early Childhood Outcomes) center which has information on how children with autism are faring at http://projects.fpg.unc.edu/~eco.
Families need to know that in developing an IFSP (Individualized Family Service Plan) as part of the early intervention team, the focus is on the family, not just the child, and which supports are needed for success. Children may be eligible for therapies like speech/occupational/physical, audiology, assistive technology, nutrition, and other services to help them reach their developmental milestones.
The Statewide Parent Advocacy Network (SPAN), New Jersey’s Parent Training and Information Center (PTI), Family to Family Health Information Center (F2F), and Parent to Parent (P2P) program, is implementing a project funded from the US Department of Health and Human Services’ Health Resources and Services Administration (HRSA) as part of the Combating Autism Act to assist families of children with autism and other developmental disabilities to improve services and outcomes for their children, youth, and young adults. SPAN provides families with a “one-stop” for free help on education, health, and support.
The aim of our project is to “improve access to comprehensive, coordinated care” for the child and their family. We have 4 goals: 1) Strengthen the infrastructure needed to achieve and sustain an integrated, community-based system of services that achieves the six core outcomes for children with autism and other developmental disabilities; 2) Improve access to family-centered, coordinated, comprehensive care…through medical homes; 3) Increase effective transition to adult life services; and 4) Improve active participation of families…in all aspects of their children’s care.
We are reaching these goals by basing our work on the MCHB (Maternal/Child Health Bureau) six core outcomes:
- Families will be engaged at all levels and satisfied with services. Research shows that parental involvement improves outcomes. Our grant has an emphasis with targeted focus on the underserved, as data indicates that children of color are diagnosed later and early intervention is the key to best outcomes. For more information see www.kennedykrieger.org (go to news and click on research updates).
- Access to early and continuous screening. This will improve referrals to start early intervention, but parents must remember they can also refer themselves.
- Access to a medical home. The medical home is not a place, but a concept, in which a medical professional coordinates care that is high quality and cost-effective. For more information see www.medicalhomeinfo.org.
- Access to community-based services that are easy to use. Again, support in their home communities results in better outcomes for children and their families. One of our key partners are the FQHCs (federally qualified health centers) which provide care for the uninsured and are found at http://findahealthcenter.hrsa.gov/Search_HCC.aspx
- Adequate public and private insurance to pay for needed care. Children with developmental disabilities may be eligible for employer-based insurance as well as Medicaid; for more information see http://finder.healthcare.gov. For additional information on states that have specific autism insurance coverage see http://www.autismspeaks.org/advocacy/states.
- Support effective transition to adult systems of care. It’s important to note that it’s not just “school-to-work” but can include healthcare and post-secondary education.
We recently presented at the AMCHP (Association of Maternal/Child Health Programs) conference on how to build systems of care for children with developmental disabilities (see www.amchp.org, click on calendar). Also, for more information on Combating Autism grants in all states, see http://mchb.hrsa.gov/programs/autism/statedempolicy.html.
Families need to be aware that early intervention will allow their child with a developmental disability to reach their personal best potential. For more information, go to http://www.spannj.org/cyshcn/index.html.
Lauren Agoratus is the parent of a child with autism/kidney disease. She is the NJ Coordinator of Family Voices, the national network that advocates on behalf of children with special healthcare needs. Families can find free help in their state at www.familyvoices.org/states.