By Tori Bird
February is Rare Disease Month. It is not only a time to raise awareness in the broader community about the thousands of rare diseases that impact millions of individuals and families across the world, but also a time to let parents and caregivers of newly diagnosed children know that they are not alone. Caring for a newborn or toddler is challenging in the best of times. Trying to navigate the system of disability-related supports and services while caring for your newly diagnosed baby can be overwhelming. However, a young child’s diagnosis helps to unlock a system of home-based services and supports, known as early intervention, that are specifically designed for children 0-3 years old.
Jaxson G is an energetic and upbeat eight-year-old boy who loves jumping on his trampoline, swimming, and watching Mickey Mouse. While Jaxson is a ball of light who brings joy to everyone he meets, he has had his fair share of challenges in his short life.
Jaxson was born eight weeks premature, weighing only 2lbs 15oz. He was born two hours after his twin sister and utilized a CPAP machine for days after birth to assist him with breathing. Considering Jaxson’s early entrance into the world, he remained relatively healthy as he grew. As an infant, Jaxson’s mother, Nicki, described him as being ‘solitary’. He was content being alone, he would stare off into the distance, he failed to make eye contact, and he didn’t respond to his name.
When Jaxson was twelve months old, Nicki was approached by a provider about the possibility of Autism Spectrum Disorder (ASD) based on their observations of Jaxson. They encouraged Nicki to reach out to her local area agency to schedule an evaluation. New Hampshire’s area agencies, which are located throughout the state, are responsible for administering the state’s early intervention program. Anyone who has a concern about a child’s development can make a referral to early intervention including, and most-importantly, a parent or caregiver. Following Nicki’s initial outreach, Jaxson was formally evaluated by staff from his area agency and a diagnosis of ASD was confirmed. Jaxson was sixteen months old.
Initially, Nicki didn’t know what to think or how to feel about this, but quickly decided that she was going to take advantage of any and all services she could to best support her son. But Nicki was left wondering, what services were there? Despite Nicki’s status as a seasoned mother of five, she was left feeling lost as to what resources were available to Jaxson as a young child with a developmental disability.
Through his area agency, Jaxon was enrolled in Family-Centered Early Supports and Services (FCESS), also known as early intervention. Early intervention provides comprehensive evaluations and services for infants and young children with developmental disabilities, including autism. Early intervention services take place in a child’s home or other location where the child spends time so that the child and their caregivers can better actively participate. Services and supports can include service coordination as well as:
- Vision and hearing services
- Speech, physical, and occupational therapy services
- Nutrition counseling & assessment
- Equipment and transportation
Although insurance may be charged, early intervention services are provided free of charge to the child and family. See https://www.dhhs.nh.gov/dcbcs/bds/earlysupport/index.htm for more information including a comprehensive list of supports and services.
While Jaxson was enrolled in early intervention, an occupational therapist came to his house and worked with him and his family on how to integrate therapy into their daily lives through games and playtime. Although this was helpful, Nicki wishes she had known to ask for more. Considering Jaxson’s diagnosis of ASD and substantial delays in speech as well as feeding difficulties, speech therapy and a referral to a nutrition, feeding, and swallowing provider for consultation could have been provided through early intervention but wasn’t.
Another concern Nicki has is that when Jaxson’s early intervention eligibility terminated upon his third birthday, no transition plan was in place. Service coordination and assistance with a child’s transition to pre-school services are available services through early intervention but Nicki says that they weren’t offered, and again, she didn’t know to ask for them. So, instead of working with his early intervention providers to shift his care to his preschool or other providers, Jaxson’s services were discontinued with no plan in place until he began kindergarten, two years later.
Jaxson now attends a school that serves children with significant physical, medical, developmental, behavioral, and emotional disabilities and is thriving there. His excitement, though nonverbal, is evident when he sees his school bus arriving in the morning. Nicki feels fortunate that she did not have to fight to get Jaxson the services he needed within the school system or to get into the school that best fit his needs – many families have not had it as easy. However, she wishes that she had known more about the range of supports and services available through early intervention so that Jaxson could have accessed them and avoided a two-year gap in services before entering the school system.
Having knowledge about what resources are available and how to access these systems is essential when navigating the difficult and complex world of parenting a young child with disabilities. There are many resources families can look to for assistance during the first few years of their child’s life including NH Family Voices and its ‘Maneuvering the Maze’ publication, the NH Department of Health and Human Services, Bureau of Developmental Services, Family-Centered Early Support & Services, and Disability Rights Center – New Hampshire’s resources on early intervention and other related programs.
Tori Bird is a LEND Trainee at Disability Rights Center – New Hampshire (DRC-NH). DRC-NH provides information, referral, advice, legal representation, and advocacy services to individuals with disabilities. DRC-NH can help explain your rights related to FCESS/early intervention services and other disability related programs. You can contact DRC-NH at (603) 228-0432, via email at firstname.lastname@example.org or online at www.drcnh.org and set up a time to speak with an attorney free of charge.