Taylorsville-based Utah Down Syndrome Foundation earns $2,500 SelectHealth grant
Jul 25, 2018 04:12PM
By Carl Fauver
Caytie Brinkerhoff became involved with the Utah Down Syndrome Foundation to help her learn how to better care for her son Max. (UDSF)
By Carl Fauver | [email protected]
October 2012 was a difficult time for Kaydee McMahon and her husband, as she was delivering their first child at a Logan hospital,. Having chosen not to undergo an amniocentesis during her pregnancy, the young couple, which had met at Utah State University, was completely surprised to learn their first child had Down syndrome.
That’s also when she first learned of the Utah Down Syndrome Foundation, the organization she now works for as program coordinator. That also makes her primarily responsible for determining how best to spend the $2,500 grant the organization recently received from SelectHealth, through its “Select 25” program.
“It was such a shock when Haley was born and we learned she had Down syndrome,” Kaydee McMahon said. “Someone on the hospital staff asked us if it would be all right if they notified the Utah Down Syndrome Foundation about our case. We told them ‘yes,’ and that was my first introduction to an organization that does so much and I am so happy to work for.”
Within a day or two — while Kaydee McMahon was still at the Logan hospital — a Cache Valley-based UDSF volunteer arrived with a welcome packet to acquaint the McMahons with what they might expect from their special needs child and what the foundation could offer in the way of assistance.
“It was terrific, welcome support at such a critical time in our lives,” Kaydee McMahon said. “We began to attend UDSF activities. They provided us with books and pamphlets. I was very impressed and knew I wanted to be a part of the organization.”
Flash forward a couple of years, and the McMahons had moved to the Salt Lake Valley, when the part-time UDSF program coordinator position came open. With her previous experience teaching special education children — and raising a Down syndrome child of her own — Kaydee McMahon was chosen for the job.
Her boss — and the only other paid, part-time employee of the UDSF — was CEO Steve Hansen, until his recent retirement.
“Statewide, about 50 Down syndrome children are born in Utah each month,” Hansen said. “When one of them is born, hospital personnel ask the parents if we can reach out to them. Due to privacy laws, they can’t simply report to us that a Down syndrome child has been born. But most parents allow us to contact them, and we have a cadre of volunteers who go out to talk with the parents.”
In a recent full-page newspaper advertisement announcing the 25 recipients of the 2018 “Select 25” grants provided by SelectHealth, it mentioned the Utah Down Syndrome Foundation as being based in Taylorsville. But Hansen admits that is a little misleading, calling UDSF a statewide organization.
“The only reason it said Taylorsville is because we have no offices, but I live in Taylorsville and keep the CEO paperwork in my basement,” Hansen said. However, that loose tie to the community was enough to prompt SelectHealth to invite Mayor Kristie Overson to attend the announcement luncheon, where all of the grant recipients were announced publically for the first time.
“(Mayor Overson) sat at our luncheon table and was very interested to learn how UDSF serves Utah parents,” Kaydee McMahon said.
Later that week, Overson shared the accomplishments of the foundation during her mayor’s report to the Taylorsville City Council.
The $2,500 grant awarded this year, follows an identical $2,500 grant UDSF received from SelectHealth in 2015.
“We applied for that 2015 grant just a couple of months after I began working for the foundation,” Hansen said. “After we earned it, SelectHealth said we would have to wait three years to be eligible to apply for it again. So we did, and now we have won again. So one of the last things I told Kaydee (McMahon) was to apply for it again in another three years, because so far we are two for two.”
Although the UDSF has been around since 1977 — when some concerned Utah parents started it — the organization still operates on an annual budget of only about $100,000. So a $2,500 grant every three years represents a significant portion of the foundation’s funding.
“We plan to use this new grant funding to develop a ‘Kindergarten Kickoff’ program,” Kaydee McMahon said. “We envision this to be a series of four learning sessions parents can participate in as their special needs child is preparing to enter kindergarten. We are still working out the details. Eventually, we would like to see this evolve into an on-line curriculum so we can assist parents throughout the state at minimal cost.”
The Utah Down Syndrome Foundation has a volunteer board of directors and serves about 1,500 Utah families. For more information, visit www.udsf.org.