With limited means, Pamela Oguagha has been resourceful enough to create a life full of enriching, therapeutic activities for her daughter Taylor, along with educationally and medically needed services. But she finds the process overwhelming. “Because my daughter is high-functioning, less is available.”
“About 90% of the time, Taylor is a typical teenager who happens to have autism,” says Pamela Oguagha of her 15-year-old daughter. “She knows her way to school, the store, she has her own key. She uses the bus herself.”
But Taylor isn’t quite typical. In addition to autism, she lives with ADHD, beta thalisema sickle cell disorder, learning disabilities and behavioral challenges. At an age when other girls might start babysitting, Taylor has a constant need for supervised, structured activities.
Divorced from Taylor’s father and with an older daughter away at college, Pamela works full-time and has arranged for before and after school care for Taylor. “She has a scholarship through Girl Scouts for sleep away camp, and the choir lets her participate without paying. We pay a portion when we can.”
The Oguaghas live in Maryland, which provides the family with up to $3,000 per year in flexible funding known as Rolling Access. “Rolling Access funding is my saving grace,” says Pamela, who uses the funds for Taylor’s eyeglasses, camp, family support services, and co-payments.
I have had to quit work, take a lower-paying job and change my work hours to provide support and parenting for Taylor.
Pamela spends a tremendous amount of time coordinating her daughter’s care. “I’m on the phone with someone all the time, or texting or e-mailing.” Her employer is understanding, but it’s difficult when she has to arrive to work late or leave early, like when she must take time off to pick up Taylor’s prescription—considered a controlled substance—in person at the doctor’s office. Last year, in order to make sure Taylor’s special education program was meeting her needs, Pamela had to hire advocates to attend Taylor’s IEP meetings. She still spends a lot of early mornings at Taylor’s school, from which getting to work on time requires a more costly commute.
“I have had to quit work, take a lower-paying job and change my work hours to provide support and parenting for Taylor,” Pamela says.
Currently, Taylor is struggling with two recent blows: the death of her grandmother, who provided a significant amount of caregiving and support, and Pamela’s own active treatment for breast cancer. Grieving and anxious, this semi-independent young woman has lately needed assistance with even basic tasks. A behavior specialist comes every day to help her get ready for school. Pamela initially paid for that out of pocket, but successfully advocated to get it covered as emergency respite care.
Even with these resources, however, Taylor’s need for mental health services continues to be inadequately addressed. Pamela is looking for a suitable provider, but few are trained to treat mental health issues in adolescents with autism. When she does find someone she will have to pay part of the cost, which may be up to $240 per session. In the meantime, Taylor attends a grief support group for teens, for which Pamela negotiated a $10 co-payment instead of the regular $20.
“I make about $5 too much to qualify for SSI for Taylor,” Pamela says. “It is so small, it’s killing me. The impact has been phenomenal, because if I could get SSI, Taylor could get medical assistance. And whatever that medical assistance didn’t cover, my insurance would kick in. So I’m strapped both financially and medically. But that would change our lives.”