Phoenix resident Nicole Anderson first stepped through the doors of United Cerebral Palsy of Central Arizona almost four years ago, when her then 10-month-old daughter was in need of specialized care and services. After four years of intensive therapy and treatment, Nicole’s daughter has achieved a major milestone…of walking into her bedroom for the very first time.
“Having your 5-year-old gesture which way to turn to get to her room in her gait trainer is not something that typical families would celebrate,” said Anderson, mother to Alexandra who has been diagnosed with Pitt Hopkins Syndrome, a rare genetic disorder impacting less than 1000 individuals worldwide. “However, for families with special needs, these are major celebrations and they do not happen without years of therapy and special care.”
For the Anderson family, this milestone was celebrated at home. UCP of Central Arizona was required to temporarily close their facilities and campuses due to Governor Ducey’s order on social distancing measures limiting groups of more than 10 people from congregating. Surprisingly, families like Nicole Anderson’s viewed the campus closing as a relief.
“Most of the families at UCP have kids with compromised immune systems,” said Anderson. “We knew that taking measures to keep them safe during this time was a priority. The only question that remained was, how would therapy continue?”
For children with disabilities such as cerebral palsy, autism, and other developmental delays, pausing therapy is not an option. That is why UCP of Central Arizona has quickly launched teletherapy services, making virtual, one-on-one therapy sessions a reality for parents like the Andersons.
“Continuity is especially important for those receiving treatment and therapy,” said Brenda Hanserd, CEO of UCP of Central Arizona. “Our number one priority was to provide our families with alternative options to ensure that treatment and therapy would continue without interruption.”
During teletherapy sessions, a licensed UCP therapist virtually visits with families using a secure, two-way video call. The remote therapy sessions are held in close partnership between therapists, patients, and parents or caregivers at home. The sessions’ goal is to continue to maintain progress for a child or adult with special needs and maintain prioritized protocols without missing a beat. In addition, the virtual sessions give UCP families ideas for using tools and objects around the house to help master new skills and assist in daily functions. Parents can now be more involved than ever, using hands-on techniques to help their child achieve everyday miracles at home.
While teletherapy is essential for children with disabilities, so is the need for donations to ensure critical care is uninterrupted for UCP families. Without this vital funding, a child’s developmental progress could be put on hold.
“Maintaining a routine schedule in therapy is key for families like ours,” added Anderson. “Also, keeping the connection with therapists that my daughter has learned to depend on and trust over the years is critical. We are so grateful that we are able to continue therapy through virtual technology, until the UCP facilities can resume typical operations.”
Studies show that 90 percent of brain growth happens before age five. Postponing therapy is not an option for children with unique developmental challenges.
“The families we serve depend on our ability to provide access to daily therapy, whether virtual like now or in-person like we’ve done for years,” said Hanserd. “Unfortunately, for some of our families, their insurance doesn’t cover teletherapy and are having to decide between paying out of pocket or canceling services. I am grateful for our donors that have supported us throughout the years. Now more than ever, our families could use the financial support to be able to receive uninterrupted therapy.”
Finding balance in the new reality is hard for all families, but families with special needs have been the hardest hit.
As tears filled her eyes, Anderson said: “My daughter inspires me every day to keep going and doing my best. For parents of children with special needs the stakes are even higher. If we fall apart, they have nothing to lean on. We have to remain at our best, there simply is no other option.”
To ensure UCP families have access to teletherapy services, individuals may donate at ucpofcentralaz.org. For more information about UCP’s teletherapy programs, or to schedule a session, e-mail therapyinfo@ucpofcentralaz.org or call 602-682-1893. Follow along on social media for updates and announcements here.