WEB Jenna 8

Above: Marilyn McCombe is the new executive director of The Arc of North Central Virginia. Her daughter Jenna is her inspiration.

A Small Organization with a Big Mission

Story and Photos by Robin Earl

The Arc of North Central Virginia was founded in 2010 to serve families in Fauquier, Culpeper, Rappahannock, Orange and Madison counties to advocate for individuals with intellectual and developmental disabilities. In December, the small organization with big goals turned a corner with the appointment of Marilyn McCombe as executive director.

In an interview shortly after the announcement, McCombe seemed to breathe a sigh of relief. “Having a regular staff makes a big difference,” she said. “We have five board members and me. Our board is very engaged, they get stuff done, but they all have full time jobs – one homeschools and has seven children!”

McCombe spends the majority of her time building membership, holding events. “One of our core services is one-on-one consultations with parents about what resources are available for them and their children. Many have little idea what supports and services are available. They have questions about Medicaid waivers, which community organizations can help. They are trying to solve problems. We help them find the answers.”

McCombe said that many of the families The Arc serves have a child with autism or Down syndrome.  She explained, “Developmental disabilities begin during early childhood, impact day-to-day living, and usually last a lifetime; they are not the result of an accident or injury, as a brain injury would be.”

She said, “When a parent comes in, we ask them what their supports look like. Questions on Medicaid waivers are very common. A parent might be struggling with behavior issues, for instance. Medicaid waivers are available to hire people to provide supervision; they allow for a respite for the parent.”

“What do you do after graduation? What we’re realizing is, it’s like starting all over again. There are fewer resources than when your kids are little. We’re trying to be proactive about helping people through this transition.”

An assessment of daily living skills is carried out when a parent applies for a Medicaid waiver. McCombe said, “The abilities of the child must be significantly below typically functioning level to qualify. I can help parents arrange for the assessment.”

It’s Personal

Like most of the parents involved with The Arc’s mission, McCombe has a personal incentive to advocate for children with developmental disabilities: Her name is Jenna. McCombe’s 19-year-old daughter has Down syndrome and some physical limitations. She graduated in May from Kettle Run High School in Nokesville.

McCombe asked a question many parents are asking: “What do you do after graduation? What we’re realizing is, it’s like starting all over again. There are fewer resources than when your kids are little.” This realization, McCombe said, has affected her work at The Arc. “We are trying to be proactive about helping people through this transition.”

McCombe is working on getting job training for Jenna. “We’re figuring out what job would work for her. We think she could manage 15 to 20 hours a week.” Jenna has a job coach, who tests her capabilities and assesses what type of job might best suit her.

Autism Presents Unique Challenges

McCombe said that in some ways, students with autism have a more difficult road. Students with Down syndrome are recognizable. “But when you look at someone with autism, you can’t tell. If they speak or perform well, you make assumptions about what they understand or can do. When kids do well academically, it makes it more difficult to demonstrate the need for other supports in schools. It’s easy to misinterpret abilities and behaviors.”

McCombe works out of offices at the PATH Foundation in Warrenton. “This facility has been tremendous for our growth,” said McCombe, adding that she has about 65 families on her contact list. “What we do overlaps with PATH’s Resource Center. They are a clearinghouse for services.”

Says McCombe, “You don’t know what you don’t know. If a parent gets hold of the wrong information, it puts up a wall to getting what they need. Our board is connected to lot of different resources. I feel confident that any question that comes up – we will find an answer.”

 “Build on success. Don’t get dragged under by what your child can’t do; focus on what he or she can do.”

Lessons Learned

Jenna has taught her mom many lessons that have informed her work with The Arc:

    • Early intervention is a gamechanger; therapists with high expectations have the most success. A lack of potential is often the result of a lack of expectations.
    • Focus on the blessings; parents who are struggling with barriers sometimes have difficulty seeing beyond the immediate problem.
    • Build on success, don’t get dragged under by what your child can’t do; focus on what he or she can do.
    • There is tremendous value in an inclusive mindset. “Do the typical thing until you can’t.”
    • Presume competence and have high expectations. Everyone has the potential to be a life-long learner.
      • Parents banding together can be very successful. One parent often doesn’t have the power to drive lasting change.
    • Stay in the moment. “This is the biggest lesson I’ve learned from Jenna. She plans, but she doesn’t worry.” McCombe said, “We had a birthday party and only one person showed up. Her reaction was, ‘Oh cool, let’s have fun!’ She is joyful.”

Caregiver Cafés

The Arc of North Central Virginia hosts the Caregiver Café program, open to all caregivers in the community. Cafés provide support in a variety of ways, including boosting awareness, confidence and connection with other caregivers. Program activities include small and large group conversations about critical aspects of self-care including connection, communication and access to concrete supports in times of need.  Caregiver Café Warrenton

When: Friday, April 26, 1:30 to 3:30 p.m.

Where: Ledo Pizza, 504 Fletcher Drive, Warrenton

Cost: Free. Refreshments provided.

Registration required: https://events.eventzilla.net/e/caregiver-cafe-warrenton-2138724127; or by email at info@arcofncv.org

The Arc of North Central Virginia serves families in Fauquier, Culpeper, Rappahannock, Orange and Madison counties – providing consultations, hosting informational and social events, and collaborating with local public and private organizations to build support for those with intellectual and developmental disabilities.

Local parents can reach out to The Arc of North Central Virginia by email at info@arcofncv.org or by phone at 571-399-5390.

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