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From the Front Lines: Empowering Those Living with Developmental Disabilities

During National Developmental Disabilities and Autism Awareness Month, we’re highlighting our long-time partner Valley Mountain Regional Center (VMRC). For more than 20 years, MedicAlert Foundation and VMRC have shared a mission to not only protect, but also empower those living with developmental and intellectual disabilities.

Recently, we had the privilege of having an in-depth conversation with Claire Lazaro, Clinical Director of VMRC. Ms. Lazaro has been with VMRC for over a year, but she’s been associated with the center for more than a decade.

As a registered nurse in the United States, a physician in the Philippines, and recently board-certified nurse practitioner in California, Ms. Lazaro was first introduced to VMRC as a parent. Ms. Lazaro’s son and daughter are living with autism; they began utilizing the much-needed services at VMRC when Ms. Lazaro recognized that her children were not progressing on par for their ages. From the moment Ms. Lazaro was introduced to the service coordinators at VMRC, she knew the center was a special place.

“Everyone, since my first phone call, has been so supportive. I feel like with each staff member, you can see their hearts. They’re dedicated to helping the consumers and their families. Their dedication is why I am here. I am literally here because of them,” she said.

The compassion and dedicated staff at VMRC are why Ms. Lazaro became a parent board member. She saw it as a great opportunity to be the voice for parent advocates. As fate would have it, that led to her current position as the Clinical Director.

How would you describe Valley Mountain Regional Center?

Claire
: VMRC is a non-profit, private corporation that coordinates services and support for individuals living with developmental disabilities. We work with the California Department of Developmental Services, which supports families throughout the state. We’re one of the 21 Regional Centers in California established by the Lanterman Act.

The Lanterman Act is unique to California. It started as a civil rights movement. It gives people with developmental disabilities the services and support to enable them to live a more independent and normal life. It was passed by the legislature in 1969, largely because of the work of parent advocates. In those days, when a baby was born with a disability, the child was usually institutionalized. But the parents wanted more for their kids. The Lanterman Act changed everything for these families.

Today, the regional centers are the first stop for people with developmental disabilities and their families who need local support and services. Our main mission is to help people with developmental disabilities live a full life, and an inclusive life within our communities.

How were you first introduced to VMRC?

Claire:
My first exposure to VMRC was as a consumer. My son was developing at par until 12 months, then I noticed he regressed. I told his pediatrician and said “I need help; I think he could have autism.” She said, “no, your son doesn’t have it” – so she was in denial, not me. I told her again at 15 months and again she said he’s OK, and at 18 months the same thing. So, we thought he just needed more exposure to other kids. We put him in a day care, but he didn’t adapt well. It was a teacher at the school who noticed something different about my son and asked if we wanted to have him assessed. So, we finally got a referral.

I called VMRC, and they assessed my son and my daughter. At the time I thought it was only my son who was high risk, but they agreed to see my daughter too. And they both were diagnosed with autism. That was the beginning of my relationship with VMRC.

How did you join the VMRC board, and eventually the staff?

Claire
: My kids were getting services from VMRC. One of the vendors told me that VMRC was looking for a parent board member and said I should apply. I did and became a board member for 7 years. When the clinical director was about to retire, I applied. It was a good fit for me.

I am a physician in the Philippines. When we came to California, I took and passed all the exams to start my residency here. When I was applying for residency, that’s the time my kids were diagnosed. I made the decision not to continue with the residency so I could focus on my kids. They had 35 hours per week of ABA 1-on-1 programs that had a lot of parent involvement, as well as meetings every week with the clinical supervisor. It was intense in the beginning. As they got older and went to school, it gave me some time to return to my career as a health care professional.

How does VMRC help those living with developmental disabilities?

Claire
: We help them get the services they need - services that assist them in their daily lives. For kids, if they need an assessment to determine the developmental disability or condition, we can provide that as well. VMRC is not a direct services provider; we purchase the services from other agencies or vendors that provide the services to our consumers.

How does that work, the evaluation and determination of needed services?

Claire:
I’ll give myself as an example. I have two children who are consumers of the Regional Centers. I had concerns when they were younger that they possibly could have autism. VMRC assessed them for any red flags. When they saw there were red flags, they referred us to a clinician. The provider gave a diagnosis of autism and based on that diagnosis a team of people assessed their eligibility for services. As a parent, it was such a relief to have their help.

What services does VMRC offer?

Claire
: Oh, a lot! But just to be clear, we don’t deliver the services directly – as I mentioned we partner with providers in the community. VMRC makes referrals depending on the consumer’s needs. We can refer our consumers to physical therapy, occupational therapy, ABA therapy, telemedicine for psychiatry, day programs, care homes, transportation, respite, supportive employment, and individual living services. We also have a cultural specialist who helps address the different cultural needs of our consumers. VMRC is the payer of last resort so we seek out generic resources first such as medical insurance, school services, or California Children’s Services to provide their needs.

Our Early Start program serves 2,250+ children under age 3 and their families. The emphasis is family-focused, community-based, coordinated care. VMRC collaborates with other agencies and the family as an integrated team.

Often an Individual Family Service Plan (IFSP) is developed and, once developed, families can expect services to be in effect within 45 days. In the Early Start program, there are a variety of services 0-3-year-old children may receive depending on the need’s assessment. Those services could include audiology, occupational and physical therapy, social work, speech and language, health services, family training, counseling and home services.

VMRC serves adults with developmental disabilities too. We offer foster grandparent and senior companion programs. An employment specialist helps our consumers find jobs in the community to earn a living. If someone over the age of three has a disability, it’s usually a lifetime condition. We have some consumers that have been with us since they were kids.

That’s for starters. Like I said, it’s a lot. We are here to help people with developmental disabilities enrich their lives and live more independently.

Who is eligible for the services that VMRC offers?

Claire
: We have two different sets of criteria based on age. Children under 3 years of age may be eligible for our Early Start program if they have a significant gap in the areas of cognitive, physical, gross motor, fine motor, or communication skills.

For those 3 years and older, we call it a two-pronged criterion. First, they must have a qualifying condition such as cerebral palsy, epilepsy, autism spectrum disorder, or an intellectual disability or similar condition, when the disability is diagnosed before age 18. Second, if they have one of those conditions, then they must display substantial handicaps in at least 3 areas – including self-care, communications, learning, mobility, self-direction, capacity for independent living, or economic self-sufficiency.

That’s interesting that you start working with your consumers as infants.

Claire
: The infants that come to us are mostly at a high risk of developmental disability. We have an intake coordinator who works with the NICUs in the local hospitals, who can assess infants to see if they qualify as high risk. Early intervention is so important. Then we assess them every 3-6 months to track the child’s progress.

If a child is eligible for Early Start, we send out – depending on the need of the child – a physical therapist, infant development specialist, occupational therapist. They go to the home, the natural environment for the child. It’s more of a teaching and coaching situation for the family to give them the techniques and strategies to help the child with their development, since the family is with the child 24/7.

Some children progress and catch up to their peers developmentally, which is great – they no longer need our services. But there are some who still have delays. For them, we have a team of physicians and psychologists who can evaluate the assessment results and see if they are eligible for services.

What’s the scope of VMRC?

Claire
: All in all, we have close to 400 staff who support almost 16,000 consumers across our service area. We serve the counties of Amador, Calaveras, San Joaquin, Stanislaus and Tuolumne.

What is the most fulfilling part of leading your team?

Claire
: Well, so much. As a board member, and in my current position, I feel like I am giving back to VMRC for all the support they have given me. I really don’t know what I would do without VMRC. The work we do is so important for the community we support.

Even though my role is more administrative, I am still making a difference in the lives of the people who come into my path. The consumers may not know me, but I get to know some of them. For example, I review and approve every telemedicine referral, so I know that I have touched the life of that person. I may not be the PT or OT doing the assessment, but I know our organization is helping that person live a fuller life.

If we ever have delays in services, it affects me. I know that if I’m the parent, it’s really hard to wait for help. So, for me it’s a unique perspective because I’m not just a professional working here, I’m also bringing the viewpoint of a parent and family advocate.

What’s a moment in your role as clinical director that stood out to you?

Claire:
One of the main things I do as a clinical director is help consumers who don’t have family members by acting as their medical advocate. If they’re in the hospital and need consent for a procedure, I have to decide for them. For some of our older consumers, it means getting involved in end of life decisions. I’ll meet with the palliative care team to help decide on what treatment could improve quality of life.

I remember the first one I had to do. We had to change the patient’s code status from full code to DNR (Do Not Resuscitate) and comfort care. The patient was admitted in Sacramento, over an hour away. I actually went there that night. My husband was so supportive. He could see I really wanted to be there for the patient, so he offered to drive me. We got there at 10pm, visited with the patient, and made all the necessary arrangements. The patient died the next morning. But I was so glad we could be there for him when he didn’t have anyone else.

Why is MedicAlert important to VMRC?

Claire:
MedicAlert is making a difference in the lives of thousands and thousands of people. We have about 5,000 VMRC consumers who are MedicAlert members. The service spans across a lifetime.

For children, especially those with autism, having that MedicAlert bracelet indicating their condition is an alert to health care professionals. And it also is an alert for law enforcement agencies which is so important. Some children are nonverbal, and those that are verbal might not be comfortable in a social or community environment. MedicAlert brings a layer of safety and security to a parent’s life.

For adults, it’s important to have MedicAlert for first responders to be able to identify a medical condition quickly. MedicAlert is a lifesaving benefit.

What’s ahead for VMRC?

Claire
: We’re lucky to have a fantastic Executive Director whose mindset is on empowering the community, the consumers, and collaborating with them. We’ve been making VMRC more visible through a lot of community outreach. We’re actively working to expand our roster of providers so we can meet the increased need in the community. We just want to keep getting better, and help more families.