‘i Don’t Know How We Would Survive’: Caregivers Speak Of Fears Over Upcoming Medicaid Cuts

Robin Bolduc, 69, Colorado

Caregiver to spouse, Bruce Goguen (72), and girl Tiffany Zimenoff (42)

Bolduc’s hubby is simply a afloat quadriplegic and uses a ventilator to respire owed to superior progressive MS. Her girl has Down’s syndrome pinch aggregate underlying aesculapian conditions. Both Bruce and Tiffany usage location wellness services. 

“Bruce lives pinch maine and requires 24/7 line-of-sight care,” Bolduc says, noting that Medicaid pays for her husband’s attendant care, arsenic good arsenic disposable aesculapian supplies and aesculapian instrumentality specified arsenic a wheelchair, ventilator, oxygen and ablution chair. “Medicaid allows him to unrecorded successful our location alternatively than a nursing location aliases successful a hospital. He tin beryllium an important personification successful nan lives of me, his children and his grandchildren.” 

Bolduc’s girl Tiffany lives successful her ain flat pinch a live-in caregiver besides paid done Medicaid. In a emblematic month, she has aggregate expert appointments and respective outpatient aesculapian procedures – which are mostly chiefly paid done Medicare, but nan co-pays are paid done Medicaid. (People who person some Medicare and Medicaid sum are considered “dually eligible” and Medicare acts arsenic nan superior insurance.) “Medicaid allows her to work, unrecorded independently and beryllium a participating personnel of her community,” says Bolduc. 

“In Colorado, we person much support for family caregivers than galore states. Unfortunately, galore families do not person entree to each nan resources available. It is often a maze of bureaucracy to access.” 

Robin Bolduc pinch her husband, Bruce Goguen, and girl Tiffany Zimenoff. Photograph: Courtesy of Robin Bolduc

Bolduc estimates that she spends astatine slightest 8 to 10 hours a period dealing pinch security and paperwork, sometimes providing nan aforesaid accusation to aggregate systems. She besides sometimes must spell done nan appeals process arsenic a consequence of administrative mistakes connected nan portion of 1 aliases much agencies, and must get recertified each year. 

Medicaid has been a godsend that Bolduc says lets her family bask a bully value of life, contempt nan aesculapian challenges. “We person friends and family. We interact pinch neighbors. We person our dogs. We person a bully life contempt our challenges,” she says.

“And we supply employment for 5 group who activity arsenic attendants for Bruce and Tiffany. While I supply nan immense mostly of Bruce’s attraction and oversee Tiffany’s care, I simply cannot supply that level of attraction without help. And each of their attendants would suffer their job.”

The imaginable gutting of Medicaid is terrifying to Bolduc. “Without Medicaid, I honestly don’t cognize really we would survive. Bruce would dice wrong months,” she says.

Jamie Davis Smith, 40s, Washington DC

Caregiver to her girl Claire Smith, 19

Davis Smith’s daughter, Claire, was calved pinch a chromosome-related information that causes aggregate disabilities and important aesculapian conditions. 

Claire is non-verbal, uses a wheelchair and needs support for each portion of her day, from getting dressed successful nan greeting to eating meal astatine night. “Yet, she is very happy,” Davis Smith says. “She loves going for walks, watching movies pinch her siblings, going successful nan excavation and eating ice-cream.” 

Davis Smith says her girl needs changeless support for regular tasks specified arsenic brushing her teeth and taking medications, and needs personification to return her to doctor’s appointments and grip immoderate aesculapian emergencies, truthful she has an adjutant some astatine schoolhouse and astatine home. She besides requires specialized equipment, including a harness, that helps support her safe successful nan car. 

Jamie Davis Smith and her girl Claire successful an earlier photo. Photograph: Courtesy of Jamie Davis Smith

The activity performed by family caregivers is often overlooked, and Davis Smith says it tin return a toll: “There is simply a shortage of caregivers disposable for location and organization support. Since we tin ne'er count connected personification being available, a genitor ever needs to beryllium capable to driblet everything to attraction for her. I had to time off my career, and it’s difficult to scheme anything.”

Like galore families, Davis Smith’s family relies connected a operation of programs and resources – which successful their lawsuit includes backstage security – to get nan services they need. Medicaid tin thief capable successful nan gaps and screen immoderate of nan costs that would different beryllium overwhelming. “Even though Claire has fantabulous backstage insurance, it does not screen nan location and organization supports she needs to enactment astatine home, specified arsenic an adjutant and specialized equipment. Without Medicaid, location is simply a existent chance Claire would upwind up successful an institution, which has worse outcomes and is much expensive,” Davis Smith says.

“Claire’s needs person shaped my life. I near my career, and gathering Claire’s needs has impacted each portion of my family’s life, from wherever we unrecorded to our regular routine. Given that Claire needs changeless supervision each day, each day, we could not past without nan services Medicaid helps america access.” 

Alyson Chadwick, 45, Stony Brook, New York

Family caregiver for her mother

Chadwick’s mother has Alzheimer’s and lived pinch Chadwick for 2 years but is now astatine an assisted surviving installation – a business Chadwick fears could now beryllium successful jeopardy because of nan ripple effect that Medicaid cuts whitethorn person connected these facilities. “I americium worried they will suffer backing from Medicaid and our measure will spell up,” she says.

Her mother, who is presently applying for Medicaid, needs support for countless regular activities, Chadwick says. “She needs thief pinch her medication, meals, picking retired her clothes, going to nan bathroom, etc. Most things she does each time require thief from different people. She can’t usage nan telephone without help.”

Alyson Chadwick and her mother. Photograph: Courtesy of Alyson Chadwick

Chadwick says there’s already not capable support for family caregivers and their loved ones, a business that will astir apt get worse successful nan aftermath of Medicaid cuts. Her clip arsenic a full-time caregiver took a toll connected her successful galore ways, Chadwick says. “When my mom was surviving pinch me, each of my ain aesculapian issues were wholly ignored. I didn’t person nan clip to spell to my doctor’s appointments. Moreover, aft spending truthful overmuch clip pinch her astatine her appointments, nan past point I wanted to do was walk clip astatine much doctor’s offices.” 

There’s besides nan isolation that galore family caregivers face, thing Chadwick says is not discussed capable – and which would go worse if caregivers suffer entree to support services. This successful move could put greater strain connected nan caregivers’ ain intelligence health. “I felt very isolated because I couldn’t time off her unsocial much,” she says. “Also, she would aftermath maine up successful nan mediate of nan night, truthful I wasn’t sleeping well. I was depressed and anxious each nan time.”

Chadwick says Medicaid is simply a captious programme that helps group from a scope of backgrounds and financial situations. “People thin to deliberation Medicaid is for mediocre group successful nan soul city, but it helps a batch of middle-class families who conscionable want their loved ones to beryllium cared for,” she says. “With an ageing population, we person to person a amended measurement to support our elders and their families.”