As Arizona weighs healthcare cuts, Tucson disability caregivers seek support
Editor’s note: This story includes discussion of suicide. If you or someone you know needs help, the national suicide and crisis lifeline is available by calling or texting 988. There is also an online chat at 988lifeline.org.
November is National Family Caregivers Month, and for many Arizonans raising children with disabilities, the timing coincides with an especially uncertain moment.
As state officials consider policy changes and reductions to healthcare programs, a Tucson nonprofit is working to support families who often feel the strain. Organizers with local organization Care 4 the Caregivers offer free counseling, emotional support and community-building events.
Courtney Deeren helps run the Tucson chapter. She said demand for help is rising as families brace for potential cuts to Medicaid and other essential services.
“We’re absolutely approaching a crisis where people need more support,” Deeren said.
She knows the pressure firsthand as her son relies on specialized medical equipment and therapies.
“If Medicaid goes away, I don’t know how we’ll pay to feed him and get him the equipment and doctors he needs,” she said.
Arizona’s deliberations follow the passage of the One Big Beautiful Bill, which will cut about $1 trillion from federal healthcare programs over the span of the next decade. State agencies are now weighing their own cost-saving measures and policy changes, leaving many families with disabilities worried about losing life-sustaining care.
Tips for Caregivers
- Ask for and accept help.
- Focus on what you can do and believe that you’re doing the best you can.
- Follow a daily routine.
- Learn to say no to requests that are draining, such as hosting meals for holidays or other occasions.
- Join a support group. People in support groups know what you’re dealing with. They can cheer you on and help you solve problems.
- Seek social support.
- Take care of your health.
Source
Deeren said her goal is to give caregivers space to unwind, even briefly.
On Sunday, Nov. 23, volunteers with the nonprofit hosted a watch party for the new film “Wicked: For Good” at the Harkins Theatres Tucson Spectrum 18.
Jana Bonfield and her husband Robert were among an audience of caregivers enjoying a couple hours of respite — especially Jana, who has been a fan of “Wicked” the musical since high school.
“I’ve made him listen to every song on the second half of the soundtrack except the song ‘For Good,’” she laughed. “So the first time he really hears it is gonna be tonight.”
The Bonfields have three children who all require specialized care.
Jana said she was referred to Care 4 the Caregivers when she reached a tipping point of stress and isolation. Finding community has helped her weather the lows and celebrate the highs.
“All the hard stuff is real, but all the good stuff is real too,” she said. “My kids are freaking hilarious, they’re brilliant … They’re awesome people. That’s why we need community with Special Needs parents.”
Beyond social events, the nonprofit provides support navigating complex healthcare systems and accessing resources.
Jody Montelongo, a volunteer board member and registered nurse case manager, said caregivers often neglect their own wellbeing while coordinating round-the-clock care.
“Caregivers put their own physical health on the back burner, and then they end up with chronic medical conditions because they’re not taking the time to take care of themselves,” she said. “It’s a vicious cycle.”
Montelongo said even simple moments of connection can make a difference.
“Sometimes all caregivers need is just someone to listen, someone to be able to just verbally express all of the things,” she said.
On Friday, Nov. 21, Tucson police said they suspected two parents murdered their adult son, who had been diagnosed with Down syndrome, before dying by suicide themselves.
Tucson officers were responding to a home for a wellness check when they found 51-year-old Shane Stern dead, as well as both his parents Robert Stern, 74, and Deborah Stern, 73.
Police say Shane Stern’s quality of life was declining and that evidence indicated the deaths were planned.
Experts say cases in which caregivers harm family members with disabilities are extremely rare and complex, and motivations in this case remain unknown. Disability itself is not a proven cause of violence.
For Montelongo, the deaths are devastating and highlight the importance of accessible support systems.
“Had they known about available resources, you know, and available help …” she said.
For caregivers struggling with mental health or navigating the system, reaching out is critical, Robert Bonfield said.
“You are absolutely not alone,” he said. “I know that that’s very basic advice, but it’s also very, very helpful. A lot of us are out there.”
Care 4 the Caregivers
This nonprofit organization offers free counseling, peer support groups, respite events, and navigation help for families caring for children with significant medical needs.
care4thecaregivers.org
[email protected]
Raising Special Kids – Southern Arizona
Arizona’s statewide nonprofit for families of children with disabilities or special healthcare needs offers 1:1 parent support, IEP/504 help, care-coordination guidance, workshops, and transition-to-adulthood resources.
520-441-4007
raisingspecialkids.org
AZ DES Division of Developmental Disabilities (DDD)
This state agency provides eligibility evaluations and services for children with developmental disabilities, including therapies, habilitation, respite, and support coordination.
520-790-4701
azdes.gov/ddd
Arizona Long Term Care System (ALTCS)
Arizona’s Medicaid long-term care program for children with extensive medical needs (nursing, therapies, in-home care, equipment). ALTCS also provides eligibility evaluation for caregivers of seniors.
888-621-6880
azahcccs.gov/ALTCS
Children’s Clinics at TMC
TMC’s multispecialty medical home for children with chronic illnesses, disabilities, and complex medical needs provides care coordination, therapies, family support, and adaptive recreation programs.
Phone: 520-324-5437
Website: childrensclinics.org
Caregivers facing burnout, anxiety, or crisis can dial 9-8-8 for the suicide and crisis lifeline. Help is available in English and Spanish.
Pima County’s crisis line is 520-622-6000.
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