Family Matters: Children with special needs

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Deb Forrett, a medical social worker with Children with Special Health Needs, discussed children with special health needs on the fifth episode of "Family Matters," the talk show on Brattleboro Community Television where we discuss topics of interest to families with young children.

We are very fortunate in Vermont to have a program through the Department of Health which supports families and their children with special health needs. A child who has a complex health condition, either physical or developmental, might be eligible for services. There is a wide range of special health needs, from chronic conditions such as diabetes to metabolic conditions such as hypothyroidism to conditions such as cerebral palsy, which affects movement. If a child is not developing as expected, CSHN could offer support. This support can look different depending on the specific situation, and includes services such as specialty clinics, care coordination, respite and personal care. Deb shared that care coordination can be particularly helpful for families who have to navigate a complex system of care.

A social worker or nurse is available to meet with medical homes and schools to support a shared plan of care. The term "medical home" refers to an approach or philosophy of care that brings together providers across disciplines to support the wellness of a patient in the context of their family. For instance, if a child has a primary care physician, a nutritionist, a physical therapist, an early interventionist and other specialists, it can be challenging to make sure that all the different supports are aligned and working together. A medical home can serve as the connector between all those services and holds the child's wellness across settings.

All parents celebrate milestones — first smiles, first words, walking, going to preschool, going to kindergarten. These milestones and transitions can be more complicated for parents with a child who has special health needs. And, it is important to acknowledge this difference. Some children develop towards being able to be more independent with self-help skills, such as eating, dressing and using the bathroom. This may not happen for children with complex health issues, and thus a parent can end up continuing to be a caregiver longer than anticipated. Sometimes there are even additional care-giving responsibilities that can look more like nursing, which can be physically stressful. It is critical for parents to take care of themselves, and services such as respite care and personal care services can help give parents a break.

CSHN works with families with children from birth through the 21st year. Therefore, developmental milestones such as dating, high school, driving, graduation and moving into adulthood are also part of the mix. These can bring up questions like whether or not a child may continue to need a guardian, and what accommodations might be needed to make sure that s/he can fully engage in the world in a way that is meaningful to them. Every parent has to adjust to who their child is vs. who they thought their child might be, and having a child with a special health need can help open up this lens more broadly by removing the expectation of what is "typical" to illuminate what is meaningful and brings joy to their child. Being able to attend a friend's birthday party may be a big accomplishment for a child who has complicated health issues. Appreciating the small stuff and recognizing that it is, in fact, important is a good reminder for us all.

To learn more about CSHN, visit http://healthvermont.gov/family/cshn/cshn.aspx.

Chloe Learey is the executive director of Winston Prouty Center for Childhood Development in Brattleboro. You can watch episodes of Family Matters by visiting http://winstonprouty.org.


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