Overcoming cultural barriers to advocate for better care.
Before Creuza and her 23-year-old daughter Stephanie, who has Rett Syndrome, enrolled in Advocates Adult Family Care, they struggled to find even basic care and resources in their community – mostly because Creuza speaks Portuguese and very little English.
Individuals with Rett Syndrome have severe developmental disabilities: Stephanie is largely non-verbal, cannot read or write, and has trouble walking and using basic motor skills. Creuza struggles on a daily basis to understand Stephanie’s needs, relying mostly on facial expressions and gestures. “One of the biggest challenges is that Stephanie cannot speak and sometimes I get a little desperate,” Creuza says. “Taking her to the doctors is also a challenge. What if I say the wrong thing and they prescribe the wrong medication or treatment? Communication is the biggest challenge.”
When Creuza’s friend told her about Advocates Adult Family Care, emphasizing the diverse and multi-lingual staff, Creuza knew it was time to get extra support to care for Stephanie. Advocates set Creuza up with a Portuguese-speaking case manager and nurse. The team works closely with mother and daughter to make referrals to doctors, therapists, community programs, and other resources. They inform Creuza of Stephanie’s rights and advocate for her to get the care she needs.
Stephanie’s nurse, Celia, says working with the family has been very rewarding, and she’s seen much growth in Stephanie already. She talks about how through Advocates, the young woman has gotten involved with hippotherapy (working with horses), swimming at the local YMCA, and taking on small part-time jobs. “I enjoy the fact that we share the same language and culture,” says Celia of her relationship with both women. “I can communicate with them in their own home in their own language. Creuza is comfortable with us, and we can advocate for her and help her advocate for herself.”
With the assistance of a dedicated team, Creuza’s role as mother and caregiver has evolved as well. She’s much more informed and aware of her options. Because Adult Family Care pays caregivers a tax-free stipend, Creuza has been able to cut back her hours at work and focus on taking Stephanie’s care to the next level. She knows that as Stephanie gets older, she’ll need even more help, and a big priority is transitioning her from pediatric care to a team of adult providers, and ideally, a clinic or hospital that specializes in Rett Syndrome.
“I am very happy. You cannot even imagine how happy I am,” Creuza says. “I am now able to work less and dedicate more time to Stephanie. If I had not known about the program, Stephanie would not have the benefits that she does now.”