Work underscores importance of family in caring for people with disabilities

University Communications

It also illustrates a crucial point. The object lesson, Magaٌa says, is to describe in human terms how important the family is to Hispanic and Latino parents in caring for adult children with disabilities.

“Mrs. Rodriguez — these are not their real names, of course — and her 22-year-old son with autism, Alejandro, had been through many challenges throughout the years, especially in relation to Alejandro’s behavioral problems. He’s hyperactive and needs services not available in the community,” Magaٌa begins. “Mrs. R. struggled for years with the issue of placing Alejandro in a facility outside the home, but she was committed to keeping him within the family unit. After talking with a psychologist from her own Puerto Rican background, Mrs. R. came to see that it might be best to place her son in a residential school that had some of the intensive services he needed. She vowed that the arrangement would be temporary, and, in fact, when we interviewed her, her son was back home with her. Her husband felt that she was too overprotective. They ended up divorced.”

Magana, an assistant professor of social work and affiliated with the Chican@ and Latin@ Studies Program and the Waisman Center, began her professional career as a social worker in California. Many of her clients were Spanish-speaking Latinas, and many of them also had children with developmental disabilities. After about three years of observation, Magana concluded that there was a vast difference between the way in which Latino and non-Latino white families approached the experience.

“As a Latina myself, I was extremely interested,” she says. “I started my doctoral program by looking at Puerto Rican mothers of adults with mental retardation. Then I broadened my inquiry into schizophrenia and autism. I also began to look at African-American families and Latino groups other than Puerto Rican.” 

Out of her research has come a conviction that both Latino and African American families seem to be more inclined to involve the entire family in the care of the member with a disability.

“Families of color more often care for their child with disabilities at home, even into adulthood,” she says. “It’s important to have that individual contribute to the unity of the family.”

Magana adds that this, of course, is an important consideration of most families, not just those of color. However, service systems inadvertently may complicate matters for Latino and African American clients, she says.

“Service agencies often push for the autonomy of the individual and do not consider the needs of the whole family, which is particularly important to the families of color that I have studied,” she says.

Latina and African American mothers of adults with schizophrenia or developmental disabilities are much more likely to suffer from chronic health problems — arthritis, diabetes, heart problems — than their non-caregiving counterparts, Magana says. In addition, Latina mothers also suffer from depression.

“This means that while these families are saving the government money by caring for their adult children at home, as opposed to having them live in a government-funded facility, the needs of the caregivers are being overlooked. The state often disregards the fact that the family is an important institution that provides concrete services to all of us. We need to support our families in those efforts,” she says.

Magana herself is stepping out in that very direction. She’s launched a support group for Spanish-speaking families that have children with disabilities. “This group aims to educate families about the services they are entitled to, but maybe don’t know about,” she says.

She and her students also are launching a new program.

“This one, to be developed in the community, will establish a health education intervention for Latina mothers,” she says.