TRANSFORMING

Autism Spectrum Disorder (ASD) is estimated to impact 1 in 44 children in the United States according to the CDC1 (last data reported in 2020). ASD affects individuals in many different ways. For some children, ASD can contribute to significant challenges learning important skills like communicating needs, playing with other children, and staying safe at home and in the community. Communication especially poses challenges for families. Often when children cannot effectively communicate their needs (regardless of the presence of ASD) they resort to other means of communication such as crying, screaming, just taking what they need, running away, or withdrawing completely. Raising children is difficult under the most ideal of circumstances. Raising a child who has difficulty communicating is even more stressful for parents and family members. At best, a parent must guess at what their child needs on a daily basis. At worst, they must remain hypervigilant to ensure the safety of their child.

As a behavior analyst, I have spent my career helping families of children who need extra support to learn skills like communication and to participate in their families and communities. In a family-centered approach, families partner with service providers to help the family as a whole. In addition to the parents and children, a team may include regular caregivers (e.g., grandparents), therapy providers (e.g., behavior analysts and speech pathologists), teachers, social workers, medical providers, and counselors. Together, the focus is on empowering families to pursue the goals they have for each family member in a manner that is aligned with their family values and the needs of each individual.

In Nevada, it can be difficult for families with children with ASD to access the basic services JUSTin Hope Foundation

Building a community of inclusion, empowerment, and support for families and individuals with intellectual and developmental disabilities.

To learn more or get involved visit:

justinhope.org

Sierra Kids Foundation

Based in Reno, Nevada, the Sierra Kids Foundation raises funds that provide financial assistance to families in northern Nevada that need help affording their child’s autism treatment program.

To learn more or get involved visit:

sierrakidsfoundation.org

UNR's Positive Bevahior Support of Nevada

PBS - NV is a state-wide project composed of a network of professionals, parents and community members that are trying to build a sustainable culture who value and implement quality positive behavior supports.

To learn more or get involved visit:

unr.edu/nced/projects/nvpbista/family/ncedpbsnevada

by Jennifer Castellanos-Bonow, PhD, BCBA-D, LBA

TRANSFORMING CHILDREN'S LIVES

they need, let alone a family-centered model of care. As of January 2021, the Nevada Department of Health and Human Services’ Autism Treatment Assistance Program had over 200 children on it’s wait list for applied behavior analysis (ABA) services; and an average wait for enrollment of 141 days2. The total number of children in the state waiting for services is likely much higher. While health insurance can help pay for therapies like ABA, speech and language therapy, or occupational therapy, out-of-pocket costs are very high. Typically, insurance does not cover the costs of family-centered care.

Fortunately, here in northern Nevada there are community programs available for families that can help. For example, the JUSTin Hope Foundation3 provides respite care, financial resources for families in need, and training to community helpers. The Sierra Kids Foundation4 partners with local ABA providers to help families access services through scholarships that help offset financial costs. UNR’s Positive Behavior Support of Nevada5 offers workshops for families, including groups specifically for siblings of children with special needs.

The need for services and support for families with children with ASD will continue to grow. Building and maintaining programs that help families access services, connect to social support networks, and participate fully in community life is essential to a rich and thriving community. Even more importantly, these programs have the potential to transform the lives of children and families.

1 https://www.cdc.gov/ncbddd/autism/data.html 2 https://adsd.nv.gov/uploadedFiles/adsdnvgov/content/Boards/Autism/2021/ December%202020%20Presentation%20Final.pdf 3 https://www.justinhope.org/our-impact.html 4 https://sierrakidsfoundation.org/ 5 https://www.unr.edu/nced/projects/nvpbista/family/nced-pbsnevada

Jennifer Castellanos-Bonow is a Board Certified Behavior Analyst who is the managing partner and CEO of the Learning Consultants, a family centered ABA clinic located in Sparks, NV. She is an expert at helping learners grow and problem-solving to formulate unique solutions to promote success.