Serving the Santa Barbara Community from Birth to Death

Serving the Santa Barbara Community
from Birth to Death

Alpha Resource Center Helps Provide
a Smoother Path for Families

By Leslie Dinaberg | Photos by Ingrid Bostrom
August 31, 2023

Being a new parent is intimidating enough without any complications; imagine how much more overwhelming that would be if you learned that your child has an intellectual disability. 

It’s overwhelming, right?

Now imagine a group of people in the community who have walked down that road already, and are now there to help you navigate it a little more smoothly.

We do have that help available — at no charge — right here in Santa Barbara.

Now celebrating its 70th year of serving Santa Barbara County, Alpha Resource Center is there, literally from birth to the grave, to provide a wide variety of lifespan support services for families facing these challenges. Founded in 1953 by the mothers of three young children who were called “trainable mentally retarded” at the time, the early days of Alpha Resource were dedicated to educational opportunities for the children, with recreational programs beginning in 1957. Moving into its current home on Cathedral Oaks Road in 1966, over the years Alpha’s services have expanded to extend their support for individuals from birth to end of life. 

Just knowing that you’re not alone is really valuable, shares Dena Davis, whose son Benjamin, now 17, has Cornelia de Lange syndrome. He is also diagnosed with autism, ADHD, and sensory processing disorder. Connecting with other caregivers “is a really important piece, because when families receive a diagnosis of their child having an intellectual or developmental disability, it can feel lonely. To be connected right away to other families, and to hear ‘Congratulations’ right away, not ‘I’m sorry,’ is really, you know, that’s pretty powerful.”

The heart of Alpha Resource Center’s offerings is the lifespan support services, says Executive Director Josh Weitzman, who was first introduced to Alpha as a parent himself in 2007, when his and wife Jamie’s third daughter was born with Down syndrome. A few years later, with a confidence gained in part through the support Alpha provided, they adopted their son, who also has Down syndrome, from Hong Kong. 

“We try to reach families from prenatal diagnosis, or at least the birth of a child with a developmental disability, and then begin to support them through all of the systems that are out there,” says Weitzman. There’s so much to navigate. “There’s early-start programs; there’s the school system; there’s Medi-Cal and Social Security; there’s the Regional Center, which provides a lot of different types of support for people with developmental disabilities. And they’re all complex and a little scary,” he says.

“We take people by the hand and we walk them through each of those processes,” he continues. “We have parent support groups. This is really our biggest touch in the community, where the numbers have grown each year. This last year, it was about 1,200 families and professionals that we were in contact with, helping them understand more about their child’s development and the services that are available and connecting them to those things.”

“I’ve heard many, many stories that Alpha connects with families in the hospital, so that doctors at Cottage will refer families to Alpha and then the Family Resource Center will come and visit the families at the hospital,” says Davis, who now works as a navigator for the nonprofit, assisting other families. “But sometimes people are diagnosed later. They can call anytime. It’s that emotional support and then resources. … There are bilingual staff, and all the services are free, which is really, really valuable and important to know.”

“It’s nice to know that you are not alone in any of it,” says Davis. “We don’t have magic wands; things take the time they take. But it’s nice to know you’re not alone.” 

Weitzman says that he doesn’t know how much of the community actually knows all that Alpha offers, adding, “We regularly have people who don’t realize these services are out there and start off feeling alone, until we’re hopefully able to get some way of contacting them.”

The Lifespan program is broken into three different departments. In the pilot stage is Help Me Grow, Santa Barbara County. This new program is designed to be a single number, a single contact point for doctors and schools and all other support systems when they notice the delay in a child that they can reach out to that number, explains Weitzman. “And then we talk with them and triage to basically get them to the help that they need. That’s the piece that’s kind of missing right now, that broader referral, and we’re working on that.” 

The next component is a Family Resource Center, which is directly funded by the Regional Center. He explains that the Regional Center system in California is 21 independent nonprofits that basically distribute the monies that pay for the entitlement services for people with developmental disabilities. “So we work with the local Regional Center, which is the Tri-Counties Regional Center, and we provide early-start services. So that’s age 0-to-3 support. And then family support beyond that. And those families, a lot of times, get referred to us through the Regional Center. So they’re trying to get services through the Regional Center, and the Regional Center will connect them to us to help them just understand it and make sure that all the right information is there and walk with them through that process.”

The third prong is a Family Empowerment Center, through the Department of Education. “This is helping people navigate school support,” Weitzman explains. “Typically, once your child hits 3, they move into the school district for their services; that’s where they come from, through preschool, and then through all the ages. So IEP is the acronym for individualized education plan. And this is how you make sure that your child gets the support they need in school to get a fair and appropriate education.”

Helping families understand the IEP process is a big part of the support Alpha offers. A former teacher for Santa Barbara Unified Schools, Davis says that even though she has professional training, she’s had Alpha Family Empowerment Center staff sit in on Benjamin’s IEP meetings, “just to have another set of ears in the meeting, in case I missed something, or kind of preparing for those meetings, just helping me narrow down my questions, so that I wasn’t scattered all over the place. The Family Empowerment Center also offers parent training on IEP basics and different aspects. So I got myself very knowledgeable. And the Family Resource Center offered workshops on organizing all the documents that we have to juggle as parents of kids with disabilities, the medical side of it, and just education.”

That education really is a lifelong process for parents. Sue Anne Parsons, whose daughter Jessica was born with Down syndrome and is now 30 years old, has had a relationship with Alpha Resource Center since Jessica was born.

“We had our hands full, as Jessica is a twin and we had three other older children to care for. It felt like we were in a fog for the first three years,” shares Parsons. “We had lots of services that were available for her, and the kind people with the Family Resource Center helped us navigate and understand what was needed. Their program had staff and volunteers who, like us, were parents in the community, who were knowledgeable and understood Jessica’s needs. With their help, we were able to select and provide Jessica with the best early-start care that was available.”

Over time, of course, needs change. Parsons says, “Each milestone in Jessica’s life has brought on new challenges to work out. From obtaining occupational and speech therapy, to making friends with her peers in the community, Alpha has been there to advise and advocate for us.”

She continued, “Alpha’s Family Empowerment Center has given us and other families vital information through workshops on transitioning through the school years and navigating beyond high school. With the help of this program, we have been able to discuss her individual needs in moving to a more independent living situation.

“Since we are a family of yoga teachers, Jessica has practiced yoga almost her entire life. With the support from Alpha, she was encouraged to teach, and she has become a yoga teacher herself! Her classes have been supported by Alpha for many years. She first taught on their campus, and now folks from the Alpha Day Program come to her Inclusive Yoga for All classes at the Carrillo Recreation Center,” says Parsons, who with her husband, Jim, opened the first yoga studio in Santa Barbara (Let It Go Yoga) in 1986. In another family milestone, Jessica is the first certified yoga teacher with Down syndrome.

Though her daughter doesn’t partake in the many adult day programs that Alpha offers, Parsons says “Jessica is now enjoying Alpha’s Teen Extreme/EXPO program, where she meets new friends and gets to see many of the friends that she has grown up with. Teen Extreme/EXPO provides social activities for teens and adults. With this program, she has had many trips to Disneyland and camping at El Capitan. She has gone canoeing, kayaking, and has attended many local theater performances. She loves their karaoke nights, movie nights, dance parties, and putting on performances with friends at Alpha.” 

That lifetime of guidance and support is a really important part of what Alpha offers. Davis’s son Benjamin is a senior at Santa Barbara High and will participate in a transition program after graduation. “He will be part of the district until he’s 22,” she explains. She and her husband are consulting with Alpha and other families to get things in order for the time when their son will no longer be in school. “I am learning quickly, so I can help other families. … A lot of day programs don’t have openings. And you know, there is supported employment. There’s living conditions to think about; we’re not going to be here forever. And that’s a really hard one to think about. So that’s kind of where we are right now.”

The Parsons family has also enlisted Alpha’s help in one of the hardest things for a parent to contemplate: their own mortality. “Their amazing staff has given us invaluable information with the even-harder task of planning for Jessica’s needs beyond our lifetime,” says Parsons.

“I think our entire family has been deeply transformed by meeting others with intellectual disabilities. We also value the friendships we have made with other parents that we have met through their programs. And I must say, we so appreciate the kindness, respect, and thoughtfulness of each and every member of the Alpha staff. Jessica loves every one of them. We do, too,” says Parsons. “Santa Barbara is so lucky to have such an amazing nonprofit. Thanks to the parents who 70 years ago had the vision to help change the standards and expectations of what is possible.”

For more information, see alphasb.org.