Raising and Supporting Grandchildren with Disabilities
Advice and resources from the experts—and personal stories from grandparents who have been there
About 2.7 million children in the United States are being raised by grandparents, other relatives, and close family friends with no parents in the home, says Ana Beltran, director of the National Technical Assistance Center on Grandfamilies and Kinship Families, Generations United.
According to Generations United, a national organization that seeks to "improve the lives of children, youth, and older people through intergenerational collaboration, public policies, and programs for the enduring benefit of all," statistics on how many of these grandchildren have disabilities is not available, but they estimate that many of them do.
"Having a grandchild with a disability can feel very isolating but people with disabilities are the largest minority group in the world."
"When their parents cannot raise them, children thrive in the care of kin (family)," Beltran explains. "Decades of research confirms this statement, and federal, state and tribal laws contain preferences for placing children with kin if parents cannot care for them."
Despite the benefits, grandparents lack an automatic legal relationship to their grandchild and without that, they may not be able to access certain services that might help them provide for that child.
When these children have disabilities, accessing resources is even more critical.
Resources for Raising Grandchildren with Disabilities
"Each case is so unique," Beltran says about grandparents raising children with disabilities. "But, to access educational enrollment and services, the grandparent should attempt to gain some type of legal authority for the child. Although federal law does not require a legal relationship for the grandparent or other kin caregiver to be part of the Individualized Education Program (IEP) process and access special education services for the child, the lack of legal documentation can pose significant obstacles."
Some resources available for grandparents in this situation include websites like Grandfamilies.org and their guide to raising grandchildren with disabilities.
A list of state-by-state resources can also be found here.
Caring for the Caregiver
Beltran also suggests that grandparents in this situation prioritize their own health. "To be the most effective caregiver of others, it is essential that caregivers take care of their own physical and mental health care needs," she says. "Area Agencies on Aging (AAAs) around the country can provide an array of supportive services to grandparents and other relatives aged 55 and older raising children. I encourage caregivers to reach out to their local AAA and ask about support groups and other services that can connect them with others in similar situations."
Michele Thorne is Executive Director of Care 4 the Caregivers, a nonprofit based out of Tempe, Ariz., that offers in-person and virtual tools and resources for caregivers of children with disabilities.
"Grandparents can take two roles when it comes to helping a grandchild with a disability," Thorne says. "If they retain their traditional role, they act as a concrete support in time of need to the parent and a vital source of support for the family. If they take on the role of raising a child with a disability and become a kinship placement, then they take on a much larger role and must learn to navigate different systems of care, to cope with the stress of raising that child, and learn how to cope with problem behaviors."
And she says, it's not uncommon for grandparents to become overwhelmed and lose their direction or sense of self.
Thorne says that Care 4 the Caregivers offers resources for both of these unique situations.
"I want grandparents to know that they are not alone," she adds. "Having a grandchild with a disability can feel very isolating but people with disabilities are the largest minority group in the world. You are not alone."
Personal Stories: Two Grandparents' Perspectives
Patricia Taylor, 70, is a grandmother based out of Phoenix, raising her grandson, JJ, age 6. He was placed with her at 17 days old, after detoxing in the NICU (Newborn Intensive Care Unit) from heroin after being born a preemie to Taylor's daughter.
Taylor shares that JJ has been diagnosed with autism, ADHD, speech delay, sensory processing disorder, delayed development, and generalized muscle weakness. Because of his birth parents' inability to take care of him, Taylor officially adopted him in 2019.
Taylor shares that her experience as a grandparent raising a grandson with disabilities has involved navigating a multitude of resources — some of which have been paid for by the state and some of which haven't. The pandemic has proved to be especially challenging.
"We have friends raising grandchildren and I never understood how they could manage. But somehow, we all do; we have summoned the energy, with smiles and laughs from the grandbabies."
"Until the pandemic started, I attended Duet support groups and it was a tremendous source of help, resources, activities, community, and support," Taylor says. "I chose not to attend online groups because JJ has great difficulty with interrupting and talkativeness. My main supports now are friends through JJ's school and his ten to fifteen hours of in-home habilitation."
"His needs continue to evolve and change," Taylor adds. "Fortunately, JJ is a very fun, loving, and curious child, which makes him a joy to be around and to work with."
Taylor advises that grandparents who find themselves in a similar situation seek out supportive services and do their best to care for themselves as well.
Phoenix residents Karen D. Puthoff and her husband Michael aren't raising a grandchild with a disability, but are supporting their daughter, Kendra Riley, and her family as they navigate caring for their three granddaughters — two of whom have been diagnosed with Metachromatic leukodystrophy (MLD). (Learn more about their journey here.)
MLD is an extremely rare, fatal brain disease that destroys the protective fatty layer (myelin sheath) surrounding the nerves in the central nervous system. It aggressively takes away motor function and other abilities when symptoms show early in life.
Puthoff's granddaughter Olivia (Livvy), 3, has MLD and has suffered many of the debilitating side effects but, last year, when her youngest granddaughter Kiera, 2, was also diagnosed, the family traveled to Italy for a cutting-edge MLD gene therapy treatment. Puthoff and her husband traveled to Italy with the family to provide extra support.
To other grandparents supporting their children who are raising disabled children of their own, Puthoff advises them to learn as much as possible about the diagnoses and talk to other grandparents in similar situations. She also recommends being flexible in scheduling.
"We have friends raising grandchildren and I never understood how they could manage. But somehow, we all do; we have summoned the energy, with smiles and laughs from the grandbabies being our precious rewards."