More than one out of every six children in the U.S. between the ages of 3 and 17 is diagnosed each year with one or more disabilities, according to CDC research released in 2017, the most recent year for which such data are available.
These disorders include attention-deficit/hyperactivity, autism spectrum, Down Syndrome, blindness, cerebral palsy, moderate-to-profound hearing loss, learning and cognitive problems, among other disabilities.
In the state of Washington, the advocacy organization Partnerships for Action, Voices for Empowerment (PAVE), provides support, training, information and resources to empower and give voice to individuals, youth and families impacted by disabilities.
Headquartered in Pierce County, PAVE serves the entire state, fielding as many as 150 requests each week from Washington families during busy times of the year.
Doreen VanderVort, parent-to-parent program coordinator for PAVE, says that finding services for special needs children can be overwhelming for families.
“It’s really daunting how you access resources. People really struggle with this,” VanderVort says during an upcoming Elevate Health Community Care Conversation podcast. “There is no one-size-fits-all set of solutions. There really needs to be a person-centered system.”
But VanderVort, the outgoing co-chair of Elevate Health’s Community Advisory Council and parent of a 10-year-old daughter with special needs, says the health and social service systems in many places, including Washington, are generally ill-equipped to provide adequate support.
That’s where PAVE comes in.
“We help get you connected,” says VanderVort. “That’s primarily what we do.”
As time goes on, however, problems associated with caring for special needs individuals only become more complicated.
For example, according to the national organization Grantmakers in Aging, there are nearly one million U.S. households in which adults with intellectual or developmental disabilities are living with caregivers 60 or older. Nationwide, half of caregivers are older than 50, and 10 percent are 75 or older.
In Washington, VanderVort explains, 80 percent of special needs kids are cared for at home by parents and other family members, many of whom are aging baby boomers.
“They’re not going to be there forever,” VanderVort says of these in-home caregivers. “We’re on our way to a crisis in the state of Washington.”
Nonetheless, VanderVort says she is hopeful that increased awareness will result in improved circumstances for special needs children and their families.
“I always have hope,” says VanderVort, noting that the federal Americans with Disabilities Act, which became law in 1990, has prompted broader societal acceptance and inclusion for those with special needs. “There’s work to be done. But there’s always hope.”
To learn more about PAVE and how to access resources for special needs children and their families in Washington, listen to this Elevate Health Community Care Conversation podcast featuring VanderVort and host Kim Bjorn, Director of Clinical Integration and Transformation at Elevate Health.
Elevate Health Podcast, sponsored by Elevate Health and its subsidiary OnePierce Community Resiliency Fund, can be accessed at ElevateHealth.org, or on Spotify, Google Music, Audible, Amazon Music, or other major listening platforms.