Doing the impossible. One day at a time.
Plus: SpEd isn't top of mind for new Secretary; Study shows long-term effects of medical motherhood; Colorado cuts early intervention and Florida's innovative lifespan service model
From pending Medicaid cuts to the collapse of the U.S. Department of Education to the possible repeal of Section 504 to the elimination of diversity, equity, inclusion and accessibility (DEIA) initiatives and language from federal websites, there is a lot of uncertainty in the world right now for medical mamas and their families. I am advising myself and my friends to focus on their local communities and what small steps they can take. It’s easy to feel overwhelmed when you start contemplating a world’s worth of problems. But when we refocus on the basics — good food, good health and good friends — we can weather many storms. Together.
On the second Sunday of every month, we feature Where is the Manual for This?!, an editorial cartoon about the medical mom life from Lenore Eklund.
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Disability Scoop: “Trump Education Secretary Confirmed Despite Special Ed Concerns”
The nation has a new secretary of education and she’s angling to free her department from its special education obligations.
The U.S. Senate voted 51 to 45 along party lines this week to confirm Linda McMahon to lead the Department of Education.
The move comes despite opposition from many disability advocates concerned by McMahon’s limited knowledge of the Individuals with Disabilities Education Act and her plans for the special education program.
During confirmation hearings, the former WWE executive was short on specifics when asked what IDEA promises students with disabilities and she repeatedly suggested to senators that oversight of the program should no longer be housed within the Education Department.
“Special education, I think it very well could go back to HHS where it started,” McMahon said, referencing the Department of Health and Human Services.
[…]McMahon told senators during the confirmation process that she “wholeheartedly” supports President Donald Trump’s “mission” to abolish the Education Department and “return education to the states.” When asked who would enforce IDEA if this were to happen, McMahon would only say that she supports maintaining funding for disability services and that “the programs have to have accountability.”[…]
• From Elsevier: “Age-related Trajectories of Health and Cognition in Mothers of Children with Developmental Disabilities: Longitudinal Findings from Two Independent Studies”
Parenting a child with a developmental disability can be a profound source of stress, particularly for mothers. This atypical parenting experience can begin with the birth of the child, or soon thereafter, and continues over the life course, often extending six decades or more. However, there is limited research on the impact of this parenting role across the full adult life course – from mothers’ early years of parenting through older age.
[…]Together, the results of analyses of these two studies revealed very similar patterns across a number of important outcomes. The inclusion in one of the studies of a nationally representative comparison group of mothers whose children did not have disabilities (n=1,181) indicated that after around age 65, aging in mothers of children with developmental disabilities differed from the norm, suggesting the ‘wear-and-tear’ effects of this common form of stressful parenting.
[…]While it is normative for aspects of parenting to be difficult, those who have children with developmental disabilities face many unique stressors. Challenges include managing persistent physical and behavioral symptoms, navigating educational and health care service systems, experiencing stigma and discrimination, and planning for uncertain futures. […]
• From KDVR (Colorado): “Early childhood services for children with developmental disabilities to take drastic cut”
The Colorado Department of Early Childhood is set to cut services for children with developmental concerns and disabilities, but the state said it’s necessary for long-term success.
The Early Intervention Program, or EI, services children up to 3 years old. The state cites budget shortfall and continued increase in children’s referrals to the program for cutting back on services to balance funding for the rest of the fiscal year.
Children will now be limited to four hours of care a month.[…]
• From Sarasota Magazine (Florida): “Alison Thomas Is Changing the Lives of People With Developmental Disabilities”
When Alison Thomas, 38, moved to Sarasota from Miami in 2010, her background as a teacher and a specialist in children’s mental health led her to The Haven, a nonprofit that offers a robust slate of services, including housing, for individuals with developmental disabilities. “When I moved to Sarasota, I wanted to become a game changer in this community,” Thomas says.
She started as the director of The Haven’s preschool; today, she is the organization’s chief operating officer, overseeing programs that support people from age 1 to adulthood.
“I love the concept of cradle to seniorhood,” she says. “We have a residential program that includes 52 full-time residents—soon to be 68. Some of our residents live into their 60s and 70s and we’ve become family as theirs passes. We’re their aunts, uncles, brothers and sisters.”
The Haven was founded in the 1950s by people Thomas calls “parent pioneers.” They rejected the idea of institutionalization for their developmentally disabled children, an uncommon response at the time. Instead, they rented a hangar near the Sarasota Bradenton International Airport and opened a small school with just four enrollees.
“We have two residents with us today from the 1963 preschool class—Eric and Elizabeth,” Thomas says. “The original school was the starting point and cornerstone of the agency, but as the original students aged up, more programming was established so that they could live meaningful and purposeful lives.” In the 70-plus years since its founding, The Haven has helped thousands of individuals and currently provides programming for 600 people with developmental disabilities. […]
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