Once a child receives a medical diagnosis of a disability, a new chapter of parenting and advocating begins: seeking out and starting therapy programs and supportive services. Parents often encounter unexpected roadblocks: Programs are full and not taking on new clients, available appointments do not align with your schedule, there are long wait times, they are out of network, and thus, out of pocket (and often very expensive). Sometimes your child’s disability does not qualify for services with your insurance coverage, even though the therapies would benefit them.
These barriers are very difficult emotionally, financially, physically, and mentally. It’s taxing and frustrating to get your hopes up and find services that can benefit your child, just to hit a roadblock or realize it isn’t feasible in your schedule or finances. Give yourself grace without guilt and realize these answers and services may not be immediate. A mother with two young children with autism spectrum disorder describes her years-long journey of obtaining a diagnosis and parenting as “harder than I ever anticipated and expected.”
Tips on finding resources for therapies and supportive services:
DISTRICT EVALUATIONS THROUGH YOUR SCHOOL DISTRICT
The US Department of Education is responsible for enforcing the Individuals with Disabilities Education Act (IDEA) and protects the rights of every child to receive a free appropriate public education (FAPE). “The IDEA governs how states and public agencies provide early intervention, special education, and related services to more than 7.5 million (as of school year 2020–21) eligible infants, toddlers, children, and youth with disabilities. Infants and toddlers, from birth through age 2, with disabilities and their families receive early intervention services under IDEA Part C. Children and youth ages 3 through 21 receive special education and related services under IDEA Part B,” the US Department of Education explains.
Your child is entitled to an assessment for services, so reach out to your school district to book an appointment. This is the first step to see if a child should receive related services such as speech therapy, occupational therapy, accommodations 504s, and IEPs.
SAN ANDREAS REGIONAL CENTER (SARC)
San Andreas Regional Center is a community-based, private nonprofit corporation funded by the State of California to serve people with developmental disabilities and their families who reside in Monterey, San Benito, Santa Cruz, and Santa Clara counties.
They provide a plethora of services, some of which include client/parent support/behavior intervention training, day care services, durable medical equipment, home health support, and out-of-house respite services. Eligible conditions include intellectual disabilities, cerebral palsy, epilepsy, autism, and a “fifth condition” (see website for more details). To apply for services, view a detailed list of services and descriptions, and schedule an intake interview, visit sanandreasregional.org.
Figuring out what services, supports, and therapies your child needs is a challenging roller coaster of emotions, often filled with obstacles outside of our control.
Take one step at a time, one appointment at a time, and recognize those are steps forward in a long journey ahead and never underestimate the hard work you are devoting to help and advocate for your child.
SABRINA HILTUNEN, is a Direct Support Professional whose idea of a perfect day is a slow and scenic drive to Big Sur, hiking below the redwood trees at Julia Pfieffer Burns State Park followed by lunch at Nepenthe.