Each week, we showcase a picture of real life from the Medical Motherhood community. If you’d like to participate, simply reply to this email. The intent is to show YOUR experience as a medical parent, not your child. What do you want people to know about the #medicalmom life?
Psst. I’m very excited for Morning Edition this Thursday on NPR, as well as their Up First podcast. I can’t reveal too much yet, but there will be links in the next edition of Medical Motherhood! Be sure to tune in if you want to hear the results of this long-time-coming investigation.
Also, a couple of weeks ago, I told you that my feature in PDX Parent was out in the August edition of the magazine. You can now read the full piece online at this link. I’ve gotten a lot of positive feedback on the piece and hope it has impact as we move into the new school year. The second part in the series will be out in November and will focus on legislative changes in Oregon.
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Arizona’s Family (News): “Arizona parents of disabled children ask for changes in proposed caregiver program”
In 2020, Arizona allowed parents of children enrolled Department of Developmental Disability (DDD) and Arizona Long Term Care System (ALTCS) to be certified and trained direct care workers (DCW) for their children.
The program, Caregiver Benefits for Parents, reimburses parents for providing care to help with the current shortage of providers. Currently, it’s set to end in September. However, the Arizona Health Care Cost Containment System (AHCCCS) has proposed to keep the program permanent but with some changes [such as a 40-hour work week].
[…Arizona mom Brandi] Coon said she’s learned a lot about what her son’s needs are. So when AHCCCS introduced this program, she knew her son would always be in good hands. “We’re really able to customize what that child needs and know that child the best to facilitate their care and their daily needs and daily activities of living,” Coon said.
Right now, 16,880 total children are living at home and receiving home and community-based services [in Arizona]. Of those, 3,469 are being served by parents as paid caregivers.[…]
• From Oregon Public Broadcasting: “Centralia School District sued after kindergartner was repeatedly isolated”
For a kindergartner with autism in Centralia, [Wash.,] a padded isolation room became a regular sight. Teachers locked him there, sometimes for nearly an hour, when they felt he disrupted class.
But school staff allegedly failed for months to tell his mother that they had been stowing him away while he was at school, according to a new complaint filed in Lewis County Superior Court.
Ashlee Fitch said she found out by accident.
[…]Fitch didn’t receive any information for months, the complaint alleges. The district reportedly mailed paperwork to an outdated address — an address that Fitch had corrected to the district on three separate occasions.
The complaint also noted that teachers had multiple in-person conversations with Fitch and never discussed restraining or isolating her son. On Dec. 10, for example, she met with the district to discuss his individualized education plan and yet “had absolutely no idea G.F. was being restrained or isolated at school.”
[…]When a staffer made an off-handed remark on Jan. 24 about Fitch’s son and the isolation room, she was “shocked and confused.”
“When she inquired for more information, she was finally informed that the district had been locking G.F. in the isolation room almost daily for the last couple months,” the complaint said.
Fitch then wrote to school officials that she was “pissed.”
“This is ABSOLUTELY RIDICULOUS to not give a 5-year-old recess and lock him up like a crazy person in a psych ward,” Fitch wrote in an email.
School staff continued to put Fitch’s son in the isolation room the next month. The practices continued when they moved to another school in the district.
In August 2022, the district transferred Fitch’s son to a school specialized for children with behavioral issues. The complaint reported that he has not had an issue since.
Dr. Lion Enns, a behavioral health specialist based in Bellevue, wrote in a report that G.F. underwent “immeasurable harm” from his treatment while attending Centralia School District. He diagnosed Fitch with post-traumatic stress disorder, attention-deficit/hyperactivity disorder and autism.[…]
• From USA Today: “Sex ed for people with disabilities is almost non-existent. Here's why that needs to change.”
[…]As sex education loses funding and becomes more restricted in scope and access, individuals with disabilities are often left out of even the most basic programs. Only five states mandate inclusive sex education for people with disabilities, and two of those are optional, while 36 states don't mention sex education for special needs at all. This lack of inclusion leaves individuals with disabilities to rely on parents and media for information, which is often incomplete, inaccurate or absent altogether.
[…]Here are the biggest things to understand:
• People with disabilities are just like the rest of us when it comes to sex: Most people with disabilities are not asexual nor are they hypersexual with uncontrollable urges. Limiting their experiences minimizes their potential for self-exploration and sexual wellbeing.
• Consent is as important as ever: Disempowering individuals with disabilities to assert their needs and desires makes them vulnerable to sexual assault and unhealthy relationships.
• For many, infantilization never ends: Guardians and support networks often treat people with disabilities as perpetual children, avoiding discussions about sex and relationships. This leaves them without a safe space to learn and explore their sexuality.
[…]These barriers to sexuality have serious consequences. Children with disabilities are four times more likely to experience sexual assault than their peers, increasing to seven times more likely as adults. Between 40% to 70% of girls with disabilities and up to 30% of boys experience sexual assault before the age of 18. Women with disabilities are more than twice as likely to contract sexually transmitted diseases than their peers. Loneliness and mental distress are much more prevalent among adults with disabilities due to social isolation and stigma around dating and relationships.
[…]Promoting sexual equality for people with disabilities is essential for their overall wellbeing and happiness. By breaking down barriers and having open conversations, we can create a more inclusive and supportive society for everyone.
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Arizona's paid parent fight; Mom of isolated kindergartener sues; Inclusive sex ed needed