- Emily began receiving $5,000 per month in parent-caregiver payments in 2021 through Medicaid.
- Her daughter is disabled and needs round-the-clock care, so she cannot work outside the home.
- The funding is temporary — it is due to end in October. After that, Emily doesn’t know what she’s going to do.
In Silverton, Oregon, Emily and her husband, Michael, care for their 6-year-old daughter, Juniper, who has multiple disabilities and complex chronic illnesses. Juniper requires 24-hour specialist care, which has impacted both parents’ ability to work outside the home.
Juniper is primarily G-tube fed, which means a tube is inserted directly into its stomach to deliver food and nutrients. Additionally, Emily tells Insider that Juniper sometimes has bouts of a cold or the flu that last from 30 minutes to two hours. The couple’s surnames have been withheld to protect their privacy.
Because Juniper is immunocompromised, the family self-isolated and took extra precautions even before the COVID-19 pandemic began. “My wife and I gave up our careers to take care of her,” Emily told Insider. “As an educator and social service provider, I would bring everything home – the flu, respiratory illnesses and other illnesses that would cause very serious effects that able-bodied children are able to fight off.”
Michael works 20-30 hours a week as a horticulturist, working outdoors while earning an average of $1,500 a month. He was unable to accept a full-time position due to Juniper’s care needs. Money is very tight, says Emily, but a federal program introduced during the pandemic offered the support needed.
The family have exhausted all forms of government assistance to make ends meet
The family has relied on several forms of government assistance to meet their needs over the years. Emily told Insider, “We’ve been through it. We’ve been living paycheck to paycheck for six years. We’ve been on SNAP [food stamps].”
Before the couple left their careers, they used the Children’s Intensive In-Home Services (CIIS) program, which connects parents of children with disabilities and complex chronic conditions with publicly funded caregivers. Parents themselves are not eligible to be paid as caregivers for their own children under this program.
“The problem is finding a skilled caregiver who will lovingly engage in the care of our child, be immunized, wear masks consistently, take COVID-19 seriously, and be committed to our family,” says Emily . “We went through 10 caregivers in less than two years because they are not well paid.”
She says their mortgage alone is $1,100; it gobbles up most of Michael’s $1,500 monthly take-home pay. They receive monthly disability insurance payments from Social Security, which help pay some bills but aren’t enough, and Medicaid covers some of their medical needs.
Relief came during the pandemic
In the past, Emily had to risk bringing home viruses that would trigger Juniper’s seizures, or risk a new caregiver bringing viruses. However, according to the Oregon Office of Developmental Disabilities Services (ODDS), paying parents of minor children with disabilities for their care services was “prohibited” under Medicaid rules before the pandemic.
But in response to the COVID-19 public health emergency, the Centers for Medicare and Medicaid Services made it possible for parents to receive financial support to care for their vulnerable children and prevent them from contracting the virus.
“ODDS has sought and received approval for a temporary option that allows parents of children with intellectual and developmental disabilities who have the highest service needs to serve as paid caregivers,” an ODDS representative said. . Funding for the program came from the Biden administration’s US bailout package, which became law in March 2021.
Now, through this Medicaid program, the family receives $5,000 a month for full-time Juniper care. The ODDS office says this temporary program will end once the federal public health emergency expires, which is now scheduled to end on October 13, 2022 (it was previously scheduled to expire in July). Unless the public health emergency is prolonged, the family will stop receiving monthly payments on October 13.
Emily doesn’t know what she’ll do when she stops receiving parent-guardian checks
While the October extension was a relief, Emily and her husband are now worried about what will happen to their finances and Juniper’s health if Emily has to return to work.
“My husband and I are quite worried,” says Emily. “I may have to go back to substitute teaching which is definitely not safe because now they have removed the mask mandate. I have tried to apply for positions online but there are none just not and they are really competitive.”
The National Disability Council reported in 2017 that people with disabilities are twice as likely to live in poverty as people without disabilities. Indeed, among people with disabilities, the poverty rate in 2019 was nearly 26%; for people without disabilities, it was 11.4%. The family is therefore far from alone.
“I don’t know what to do,” Emily said. “I have my own invisible disabilities. My husband keeps saying, ‘You need to get a job,’ but there are a lot of days I can’t get out of bed. I’m in a lot of pain. We are nervous – a lot of people are really nervous about what will happen when [the funding] ends.”