Jul 10 • 12M

The 'special needs' cost multiplier

Plus: From Iowa to Canada, the fight for services never stops

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“We must dissent from the indifference. We must dissent from the apathy. We must dissent from the fear, the hatred and the mistrust. We must dissent from a nation that has buried its head in the sand, waiting in vain for the needs of its poor, its elderly, and its sick to disappear and just blow away.” — Justice Thurgood Marshall


The second Sunday of every month Medical Motherhood publishes Where Is the Manual for This?!, an editorial cartoon by Lenore Eklund.

Medicalized equipment always costs five times more than I think it will! Can you relate? Let us know in the comments.

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Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Eugene Weekly: “A Care Coalition: Paid parent caregivers fight for funding

Paige Hall is a parent advocate who struggles to find caregivers for her medically fragile son. She says, “There is definitely a shortage of people who are able to work.” Her son’s special needs qualify for enough state-allotted hours to cover both a full-time and a part-time caregiver. Hall says finding the right fit for the job is difficult.

“We did have two caregivers kind of just up and quit one day. It’s hard to find qualified, consistent and reliable caregivers,” Hall says. “It was very stressful and heartbreaking for my son.”

While struggling to staff caregiving hours with reliable employees, Hall says she takes on much of the care her son needs herself. Getting paid for the work she already does is something she says has helped her family immensely. She says with access to these paid hours, she no longer has to worry about basic needs like paying for bills, food and transportation to regular doctors’ appointments.

“When this program started, of course I jumped on it right away because the labor is already there, it already exists,” Hall says. “He needs physical help; he needs medical help; he needs somebody there to create a consistent and reliable structure and routine. I’m already doing those things.”

Before COVID, parents were prevented from qualifying for being paid for caregiver hours by an Oregon law, with an exclusion that bars providers from offering services if “the individual is a child and the independent provider is the parent of the child.” The COVID-related qualification now allows parents to provide paid care for their disabled children if those children qualify for 240 or more caregiver service hours a month.

• From The Oregonian/OregonLive: “Hundreds of Oregon’s disabled students are illegally denied full school days, new report finds

The report details “obfuscation, hostility and silence the consultant was met with by districts,” [State Sen. Sara Gelser Blouin] said. She called that mistreatment “reflective of the experience students and parents have every day.”

The report found that while a majority of Oregon’s students with disabilities live in cities and large urban areas, the largest number of students placed on shortened school days live in small and mid-sized cities or towns. Most are of elementary school age.

Gaps in data were also identified as a major systemic issue. One anecdote: A school district’s records on shortened school days were kept in a notebook that went missing. Another: Special education records were stored “in the head” of the district’s head of special education, who subsequently passed away.

The report calls on the Oregon Department of Education to implement six specific recommendations, the most crucial of which is to implement clear, firm guidance to school districts on what situations in which it is appropriate to use shortened school days and the correct process to do so. It also suggests the department study and explore ways to help fill staffing shortages for special needs classrooms in rural areas, as well as boost support for student mental health services statewide.

• From The Gazette (Iowa): “Democrat Deidre DeJear calls for expanded access to respite care in Iowa

“Organizations like this could be doing more if we had more people working in the industry,” [gubernatorial candidate Deidre DeJear] said. “How do we do that? Well, part of that is increasing the reimbursement rate because the cost of business has gone up.”

While Camp Courageous does not receive direct government aid, many families who send their children to the camp do through Iowa Health and Community Based Services funding for waiver programs for individuals with brain injuries and intellectual and other disabilities, camp CEO Charlie Becker said.

While the camp does not endorse or support any particular candidate, Becker said DeJear’s visit provides greater exposure “and a good living testimony” to the opportunities, needs and activities available to people with special needs in Iowa.

Becker hoped DeJear’s visit “can expose the camp to a lot of people that could potentially be our future staff.”

“We’re, like everybody else, short on staff,” Becker said.

Before the pandemic, Becker said the camp averaged about 10,000 campers a year. Normally, during the summer, the camp would have 100 campers and 100 staffers for the week.

“Right now, we’re at less than half of that just because of staffing,” he said. “The demand is huge.”

• From CHAT News Today (Canada): “Father of disabled daughter calling for change to licensed child care regulations

MEDICINE HAT, [Alberta] - For Ryan Kingsley the past few months have been hard. That’s because he has been scrambling to find after school care for his 13 year-old disabled daughter who has Rett Syndrome.

[…]“It’s especially stressful when you have a disabled child. You know we are constantly worried about her health and all the complexities that go along with having a disabled child but then to get the added stress of, for all intents and purposes getting kicked out of a program that she requires for school, it is really really extremely frustrating,” he said.

[…]“The Government restricts licensed child care programs to children between the ages of 0-12. Once a child turns 13, they are no longer allowed to be in a licensed childcare program anywhere in the province. Again, this is a government regulation and not a YMCA decision or choice,” said YMCA of Medicine Hat CEO Sharon Hayward.

According to the office of the minister of children’s services, licensed child care programs must provide care to children with disabilities under the Early Learning and Child Care Act.

“The Early Learning and Child Care Act allows licensed child care programs to continue the enrolment of a child with a special need or disability up to the age of 15, and Inclusive Child Care (ICC) supports such as onsite training and coaching, and access to funding for short-term engagement supports are available to help licensed child care programs accommodate children with special needs.” said Andrew Reith, spokesperson for the minister of children’s services.

But the province stressed, that once a child with a disability reaches 13, childcare providers are no longer mandated to provide that care.


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Do you have a question about raising disabled kids that no one seems to be able to answer? Ask me and it may become a future issue.