Community connections for children with special health care needs
I have two children, both of whom occupy varying points on the autism spectrum (often depending on the day) with some other health issues thrown into the mix. As they have grown, so have their amazing personalities; so have the challenges. I suspect it is not all that different for parents of typically-developing children. Community can be particularly important for families with children who present unique challenges (and skills!) beyond the usual antics. However, for reasons from accessibility, to awareness, to stigma, those challenges/differences can be isolating.
Children and youth with special health care needs are those who have or are at risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services beyond what children generally require. For example, a child who has a developmental disability such as Down syndrome, as well as asthma or allergies, would be considered to have a special health care need. Another example might be someone with ADHD and diabetes. In Washington State, an estimated 235,920 children and youth under age 18 have a special health care need – that is 15% of all youth. Connection to health care, education, community, and family support are important factors in the quality of life for individuals with special health care needs and their families.
One important resource for children and families with a diagnosed or potential special health care need is Early Intervention, which is a system of services that can help infants and toddlers with disabilities or delays to learn key skills and catch up in their development. For children from birth to age three, Washington State Early Intervention providers offer free developmental evaluations and support services like speech, physical, or behavior therapy. These services “are designed to enable young children to be active, independent and successful participants in a variety of settings.”
In addition, Washington State has a robust and active family network of support when it comes to children and youth with special health care needs. From Parent to Parent, to PAVE , to the Father’s Network, caregivers with personal experience navigating the emotional and logistic complexities of special health care needs are an important resource. Whether you are just starting out on your journey, or have a question relating to a very specific diagnosis, chances are there is another family out there who has been down a similar path and can offer some experiential advice.
Raising children is hard and beautiful and humbling. It is a deeply individual, personal experience while at the same time having the capacity to be incredibly unifying. Parent and caregiver networks, supportive clinicians, and educational advocates have proved invaluable in my own journey to empower myself and my children to thrive and contribute as members of our local community. Working at WithinReach, I have the opportunity to help other families thrive, too.
To find out if your child would benefit from early intervention, ask your primary care provider or call our specialists at the Family Health Hotline (1-800-322-2588). This statewide, toll-free number offers help in English, Spanish and other languages.
You can find out more about peer support networks by calling the Answers for Special Kids line at 1-800-322-2588 or by visiting www.ParentHelp123.org.