Young Children with Disabilities—How to Support Them and their Families with Services, Inclusion, Empathy, and More
By GEEARS for The Saporta Report
Recently, Stormey Cone, the Family Engagement and Community Outreach Specialist at Georgia Mobile Audiology, got a call from a mother who could not, no matter what she did, get her baby daughter’s hearing aid in.
So, Cone did what she always does. She drove to the home of a family who were simultaneously navigating the stress and sleep deprivation of newborn life and the unexpected complexities of their little girl’s disability. Cone got the hearing aid in. She gave Mom tips for next time and listened to her fear and frustration, bewilderment and grief—the kind of emotions any parent might experience as they negotiate the systems and routines that accompany a child’s disability.
This is the kind of scenario—one of support, empowerment, and logistical help—that we want for every Georgia family navigating life with a young child who has a disability. Because, let’s face it, under any circumstances, raising a baby or toddler can be daunting. There is the momentous hunt for highquality child care. The impact on a parent’s ability to work or go to school outside the home. The high cost of necessities like food, clothes, and diapers.
Parents whose children have disabilities face all these challenges and more. They have to forge through a maze of referrals, evaluations, diagnoses, and treatments or therapies. They must master the bureaucracy of making insurance and state agency claims—or paying for those costs out-of-pocket. And, of course, the emotional toll of this new reality can be profound. This is one reason that last week, the Georgia Department of Early Care and Learning and Governor Kemp proclaimed February 12 – 16th to be Inclusive Early Learning Week in Georgia. DECAL’s Inclusion and Behavior Support Program provided inclusive activities and resources for families and early learning professionals who support young children with disabilities. For more information, visit DECAL’s webpage here.
Some Georgia-based organizations, like Cone’s, have the resources and flexibility for employees to hop in their car for a spontaneous house call. Others operate with more limited budgets, policies, and workforce.
GEEARS’ researchers and advocates have been learning about the systems, programs, and financial mechanisms Georgian families can access for their children with disabilities. Most of all, we’ve been diving into the experiences of families beginning their journeys after a baby or toddler’s diagnosis. Our goals? To help families access the very best treatments and supports; to encourage a culture of inclusion for every child; to strengthen the systems that can make these things possible.
Read on for a quick tutorial on those systems:
GEEARS recently published an explainer about the Individuals with Disabilities Education Act (IDEA), the federal law that outlines critical services that will improve the educational experiences of children with disabilities. One of these is early intervention services for children birth to 36 months, known in Georgia as Babies Can’t Wait. BCW coordinates services for children who’ve already been diagnosed with a condition such as autism, blindness, or Down Syndrome. But it’s also a resource for children who are displaying a significant need or delay. In that case, the child can be referred for evaluation and eligibility determination, a process that, by law, must be completed within 45 days of the referral. After that, if eligible, the child will be given an Individualized Family Service Plan which enables the parents, if they choose, to enroll their child for Babies Can’t Wait services. BCW is offered on a sliding scale. Services can be covered by private insurance or Medicaid. The Department of Public Health acts as the payor of last resort to ensure access to families.
Between ages three and five, children with disabilities, whether or not they’re BCW “graduates,” may be eligible to enter. . .
If a child meets eligibility requirements for special education services, school representatives, teachers, and family members form a team to outline an Individualized Education Program (IEP) to develop goals, determine the best classroom placement, formulate intervention strategies, and identify the special education services that will help the child make progress toward their developmental goals. Additionally, special education teachers utilize the Georgia Early Learning and Development Standards (GELDS) to help meet IEP goals and provide developmentally appropriate instruction. This program offers flexibility in the amount and type of support needed to meet the varying needs of children who are eligible for services. Each child’s IEP is uniquely designed to meet the specific needs of the child. Preschool Special Education plays a critical role in preparing students to meet grade-level expectations in the K-12 system.
Whether they’re enrolled in Babies Can’t Wait or Preschool Special Education, your child’s care and education will ideally be “inclusive.” This means that, rather than being siloed, children with disabilities learn alongside typically developing kids, an integration that benefits all the students by demystifying disability and building a diverse and empathy-driven classroom community. We explore this idea in a blog recounting our recent tour of inclusive child care programs around the state.
Do these three systems help families access the services they need for their children? Yes. Are there limitations that make some barriers to service feel insurmountable? Also, yes. The most recently available data makes it clear that not all of Georgia’s children with disabilities are accessing services they could use. About five percent of Georgia infants and toddlers, for instance, received BCW services—2.7 percent lower than the national average. About 4.6 percent of three-to-five-year-old Georgians participated in Preschool Special Education—about two percent lower than the national average.
That’s why GEEARS is building our knowledge bank to strengthen Georgia’s systems—and our workforce of service coordinators, special instructors, therapists, early educators, and more. (The current availability of providers like these is stretched thin due to low wages.) As it currently stands, parents of children with disabilities have more hoops to jump through than those with typically developing children. We want to change this equation so that our state makes the passage through these first years of parenting easier for all children, especially families whose children have disabilities. In doing so, we will increase their kids’ chances for success in the future.
Just as parents are on this journey for the long haul, so, too, is GEEARS. We look forward to gathering more stories, data, and recommendations from the experts, providers, and families. Together, we’re all striving to make sure children with disabilities reach their potential in early learning environments that are inclusive, well-resourced, and outfitted for their needs.