Medical Motherhood

30/10/2024

Remember when I wrote about using ChatGPT as my medical mama assistant? Two years later, AI is doing even more heavy lifting for families like ours. Axios caught up with me last week to talk about it!
Also in this issue: shocking numbers about unpaid caregivers in Kansas, and parents in Oklahoma are fighting for their kids' right to be included in regular classrooms.

https://www.medicalmotherhood.com/p/how-to-use-ai-to-hack-medical-parent

Plus: Kansas study underscores unpaid caregiving work and some Oklahoma schools resist inclusion

22/10/2024

📰 This Week's Medical Motherhood Issue! 📰

💸 Families Sacrifice Time and Money: New tools reveal the hidden financial cost of caregiving — $270k per year in some cases! As Congress debates a tax credit, families need solutions now. (From CBS News)

🗳️ Disability Issues Ignored as Election Nears: With over 40 million eligible disabled voters, presidential candidates remain largely silent on policies for this crucial voting bloc. (From Disability Scoop)

💔 15 Years' Experience Fighting for Disabled Children: UK Parents are overwhelmed and desperate, pushing for the government to rebuild trust and invest in children with complex needs. (Opinion piece from The Sun)

Read more and subscribe!

Plus: Calculate the cost of your caregiving labor and one UK medical mama blasts her government for its bureaucracy and systemic failures

16/10/2024

Are you haunted by the ghosts of accessibility past? 😂🫠 Check out this month's Where is the Manual For This?! comic by Lenore Eklund.

Plus:
1️⃣ A federal appeals court upholds the order for New Mexico to provide in-home nursing services to children with life-threatening illnesses, impacting many more families in need.

2️⃣ After 304 days in an ER, 13-year-old Abby Bedard finally leaves the hospital to start her new life. Maine’s lack of care services has drawn federal attention.

3️⃣ A shocking new report reveals that students with disabilities have minimal access to college readiness programs — leaving most without a path to higher education despite their academic abilities.

🔗 Click to read more about these critical stories!

https://www.medicalmotherhood.com/p/the-ghosts-of-accessibility-past

08/10/2024

Medical Motherhood: International Edition!

1️⃣ In what country are two in five disabled children educated at home due to lack of appropriate school supports? (Hint: It's in Europe.)

2️⃣ At what rate are fathers in Hong Kong reporting feelings of shame regarding their disabled child?

3️⃣ A Supreme Court justice of what country called for barriers to be removed to services for disabled children and for their to be robust data collection for this population?

Find out in this week's issue:

01/10/2024

In the past couple of weeks, not one, but two in-depth stories have highlighted the ongoing fight for in Oregon! 💥📄 Kaylee Tornay’s latest feature in .west breaks down the complexities of the issue. The story features quotes from me, Shasta Kearns Moore, and fellow advocates Calli Ross and Paige Hall. Paige shares how dramatically their world changed when she was temporarily able to be paid a caregiver for her son James. 🧑‍🍼🧠

Read this week's edition of : https://www.medicalmotherhood.com/p/tough-decisions-accessing-oregons?r=k2won&utm_campaign=post&utm_medium=web

Plus:
📰 Indiana Medicaid Fraud Scandal: A whistleblower lawsuit reveals insurance companies and hospitals defrauded Indiana's Medicaid program of over $700 million, contributing to a $1 billion deficit that led to service cuts to paid family caregivers. ⚖️💰

📰 Tragic Case in Florida: A 7-year-old boy tragically starved to death under Medicaid's care, with healthcare providers falsifying records and failing to deliver life-saving services, according to court documents. He and his family had been entitled to 24/7 nursing and other supports. 💔👶

https://open.substack.com/pub/shastakm/p/tough-decisions-accessing-oregons?r=k2won&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true

28/09/2024

Medical Motherhood's News Round-up — with a special guest star! See my son and me on the KATU set. 😊

https://www.medicalmotherhood.com/p/advocates-fight-state-on-cost-of

1️⃣ Parents of disabled children in Oregon push to expand paid parent caregiving, challenging the state’s stance on funding despite acknowledging vital healthcare needs. 🚸💼

Plus:

2️⃣ Senator Bob Casey meets with a families in Pennsylvania to discuss legislation supporting families with disabled children, emphasizing the need for workforce and caregiver support. 🏛️👨‍👩‍👦

3️⃣ Autistic youth face significant gaps in mental health services, with parents and advocates calling for better community-based care and support. 🧠🧩

18/09/2024

"I don’t know what all your acronyms mean. I don’t know the difference between ketamine in a nasal spray and ketamine in an IV. I don’t know what dosage his weight requires. I don’t know how bad this injury is. I don’t know whether the adrenaline coursing through my veins and my child’s blood-curdling screams during the 20-minute (or was it 20 hours?) drive here of “I’M GOING TO DIE!!” are even remotely warranted. Hell, I don’t even know who you are. Who are you to my child?"

Read my poem "What I Know and What I Don't" published in in this week's .

Plus:
Which state is getting sued for not providing services this time? And what tips does Forbes have for working parents of ?

https://www.medicalmotherhood.com/p/what-i-know-and-what-i-dont

12/09/2024

Back to school means more time... right?

👉 Check out the latest "Where Is the Manual For This?!" cartoon from Lenore Eklund.

❗️Plus: Budget cuts threaten Louisiana services; a Texas family pushes for automatic referrals to waiver services; and Oklahoma still can't decide if hitting disabled students is a good idea or not...

Read all about it at MedicalMotherhood.com:
https://www.medicalmotherhood.com/p/new-cartoon-back-to-school-means?r=k2won&utm_campaign=post&utm_medium=web

06/09/2024

Stay informed with the news round up!

https://www.medicalmotherhood.com/p/nearly-1-in-5-disabled-students-in

1️⃣ Chicago Schools Bus Shortage: Nearly 20% of Chicago Public Schools students with disabilities lacked bus service on the first day of school due to a driver shortage. CPS has pledged to route all students soon, but an increase in disabled students has created significant challenges.

2️⃣ Inclusive Hotel Concept: A new hotel, "Morgan’s Hotel" — designed to exceed ADA standards and fully accommodate all abilities — is being developed in San Antonio near an inclusive water park. Major hotel chains are competing for the project, which aims to set a new benchmark for inclusivity in the hospitality industry.

3️⃣ Paralympian’s Perspective: Paralympian Allison Lang emphasizes that Paralympic athletes are elite competitors, not just "inspirations." She shares her journey of overcoming internal ableism and highlights the importance of visibility for disabled athletes, especially for young people watching the Paris Games.

31/08/2024

In my experience, the kids who point and stare end up being the greatest allies when their curiosity is met with accurate and neutral information.

Get more tips on how to talk to your kids about disability:

Five top expert-led tips to try when talking to your children about disability

27/08/2024

Medical Motherhood's News Round Up
Read more: https://www.medicalmotherhood.com/p/la-times-investigation-finds-1b-unspent?r=k2won&utm_campaign=post&utm_medium=web

1️⃣ Unspent Funds in California: Nearly $1 billion intended for services for Californians with developmental disabilities went unused and was returned to the state. Families say the regional centers that distribute the funds are responsible for disparities in service provision and difficulties navigating the system.

2️⃣ Special Educator Shortage: A nationwide shortage of special education teachers is affecting 39 states and Washington, D.C., as demand for special education services continues to rise. Only a few states have reported no shortages for the 2024-2025 school year.

3️⃣ Visibility for Learning Disabilities: Minnesota Gov. Tim Walz’s openness about his son’s learning disabilities is praised for raising awareness and visibility for disability issues. Advocates believe this could help normalize conversations about disabilities in public life and lead to more effective policy.

24/08/2024

📰 Medical Motherhood’s News Roundup

Read more: https://www.medicalmotherhood.com/p/roughly-90-percent-of-eligible-oregon

1️⃣ Family Sues North Carolina County: A lawsuit claims Moore County improperly retained custody of a cancer patient's disabled children and failed to provide proper care, resulting in their regression. The suit seeks damages and alleges violations of the Americans with Disabilities Act.

2️⃣ Oregon Paid Parent Care Program: Parents of disabled children in Oregon urge the state to expand the Children’s Extraordinary Needs program, which is limited by budget constraints and leaves many families on a waitlist. Advocacy efforts are underway to improve the program.

3️⃣ Maine’s Treatment Program Crisis: Maine is facing a shortage of residential treatment programs for children with disabilities, with only two programs remaining and over 100 children waiting for placement. Staffing shortages and rising costs are worsening the situation.

14/08/2024

Medical parents have our own special language... 🤫

Click through to this week's issue to read the translation of Lenore Eklund's excellent comic: https://www.medicalmotherhood.com/p/we-medical-mamas-have-our-own-secret

Plus: Tim Walz and Collin Ferrell both opened up this week about their sons' disabilities; meanwhile, Kentucky's Medicaid waiver waitlists continue to grow, despite billions in rainy day fund...

08/08/2024

Check out our latest quarterly report!

Medical Motherhood's Y4Q2 quarterly update!

07/08/2024

The August e-newsletter from Oregon features my comprehensive guide on accessible travel in Portland! The piece covers major tourist attractions with extensive links to help individuals quickly access accurate information for planning their trips or outings. Accessibility is highly individual, and this guide aims to empower you to travel. 💪 ♿

Plus, in our news roundup:

1️⃣ Feds to Enforce Accessibility Standards for Medical Equipment
The U.S. Department of Justice is finalizing a new rule to increase the availability of accessible medical diagnostic equipment. This rule, under Title II of the ADA, will ensure that hospitals and healthcare clinics improve access to medical care for people with disabilities.

2️⃣ Vegas Brewery Owners Name Beer After Daughter Who Passed Away
Nevada Brew Works owners have named a beer, Ariana Rye, after their daughter who had cerebral palsy. Proceeds from this beer support their nonprofit, the Ariana Rye Foundation, which helps families secure essential medical equipment.

3️⃣ Colorado School District Violates Special Education Rights
A Colorado Springs area school district was found to have violated federal law regarding the care of a special needs child. The district has faced multiple violations this year, highlighting systemic issues in meeting special education needs. A federal investigation is being considered.

4️⃣ California’s Long Waits for Home Care Persist
Despite California expanding its Home and Community-Based Alternatives waiver program, many families still face long waits for essential home care services. This delay forces family caregivers to fill the gaps, impacting their work and personal lives.

For more stories and to stay updated, subscribe!

Plus: Feds finally take action on inaccessible medical facilities; Systems failures from California to Colorado; and a Vegas brewery memorializes daughter in a unique way

30/07/2024

How can we make outdoor festivals like Oregon Country Fair more inclusive? Read Shasta's op/ed in Eugene Weekly this week. Plus, in our news roundup:

1️⃣ Trump's medical dad nephew reveals in a new memoir that the former president told him disabled people like his son should die.

2️⃣ A wealthy Kansas City school district became a magnet for disabled students... but serious problems with inclusion remain, according to some medical parents.

3️⃣ Extended reality video games could be the ticket to getting more exercise for physically disabled kids, according to new research.

Read these stories in this week's issue and don't forget to subscribe: https://www.medicalmotherhood.com/p/how-outdoor-festivals-like-the-oregon?r=k2won&utm_campaign=post&utm_medium=web

29/07/2024

Read Shasta's op/ed in this week's Weekly...

Shasta Kearns Moore, right, moderates a panel discussion on the OCF Front Porch stage. From left are panelists Ravi Drugan, a Paralympic skier and longtime fairgoer, Keli Schunk, Drugan’s mom and OCF staffer, and Maya Scott-Chung, an Oakland, Calif. activist with a focus on disability, public heal...

26/07/2024

New cartoon from Where is the Manual for This?! Plus:

1️⃣ Nebraska Expands Medicaid for Children with Developmental Disabilities

Nebraska’s DHHS has expanded the Katie Beckett Program, allowing more children with disabilities to qualify for Medicaid without considering their parents' income. This expansion aims to improve access to essential services and support the plan to eliminate the services waitlist.

2️⃣ 13-Year-Old with Cerebral Palsy Stuck in ER for Over 220 Days

In Skowhegan, Maine, 13-year-old Abby Bedard has been living in an ER for over 220 days due to the lack of suitable residential placement for her combined physical and mental health needs. Her story highlights the urgent need for integrated care facilities.

3️⃣ Wisconsin’s Call for Better Mental Health Services for Disabled Children

A new fact sheet from Wisconsin’s Office of Children’s Mental Health reveals that children with disabilities are more likely to need mental health services but are often underserved. The report urges improvements in care systems to better support these children and their families.

See it all and more: https://open.substack.com/pub/shastakm/p/social-media-is-not-reality-perhaps? r=k2won&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true

21/07/2024

Time for your Medical Motherhood News Roundup!

https://www.medicalmotherhood.com/p/indiana-officially-shuts-paid-parent?r=k2won&utm_campaign=post&utm_medium=web

1️⃣ A Philadelphia Family’s Fight for Caregiving Freedom

Mohamad Alsyrawan, a nonverbal man with autism and Down syndrome, relies on the dedicated care of his mother and sister. However, Pennsylvania Medicaid caps the hours family members can be paid for caregiving. Despite their religious and personal commitment, Mohamad's family faces legal challenges to provide him the care he needs without external help. This situation reflects a broader issue across many states where family caregivers are restricted or unpaid.

2️⃣ Indiana's Transition from Medicaid Attendant Care to Structured Family Care

Families of medically complex children in Indiana are struggling with the transition from the Attendant Care Program to the Structured Family Care program under Medicaid. This change has led to confusion and miscommunication, impacting the quality and stability of care. The new system pays a flat rate instead of an hourly wage, causing financial concerns for many families.

3️⃣ What a 1950s Memoir Can Teach Parents of Disabled Children

Pearl S. Buck’s memoir, The Child Who Never Grew, remains a poignant and honest exploration of parenting a child with disabilities, writes author Emily C. Bloom. Buck’s determination to find a suitable home for her daughter while pursuing her writing career offers timeless insights and comfort to parents navigating similar challenges today.

04/07/2024

✨Medical Motherhood's News Round Up✨

Read more: https://www.medicalmotherhood.com/p/more-kids-are-in-special-education?r=k2won&utm_campaign=post&utm_medium=web

1️⃣ Tennessee Accused of Abusing Disabled Kids

A class action complaint alleges the Tennessee Department of Children's Services (DCS) is mistreating disabled children, subjecting them to abuse and denying basic needs. The lawsuit highlights disturbing cases of violence and neglect, demanding immediate intervention.

2️⃣ Special Education Enrollment Reaches Record High

New data reveals 7.5 million students with disabilities were served under IDEA during the 2022-2023 school year, the highest number ever. This increase underscores the growing need for adequate resources and support across states, with significant variations in enrollment rates.

3️⃣ Arizona’s Paid Parental Caregiving Program

Arizona has made its paid parental caregiving program permanent, allowing parents to be compensated for caring for their disabled children. This initiative provides financial stability and acknowledges the vital role of parent caregivers, offering relief to many families.

Stay informed on these important issues affecting families and children with disabilities by subscribing to MedicalMotherhood.com.

24/06/2024

📰 Medical Motherhood's News Round Up! 📰

https://www.medicalmotherhood.com/p/nyc-may-soon-require-employers-to

1️⃣ NYC Bill for Caregiver Accommodations

A new NYC bill could require employers to provide accommodations for employees who care for disabled people. This includes flexible schedules and remote work options, aiming to ease the burden on caregivers balancing work and caregiving responsibilities.

2️⃣ 25 Years After Olmstead: Progress and Challenges

The landmark Olmstead decision by the Supreme Court, which decreed that people with disabilities cannot be forced into institutional care, marks 25 years. While home and community-based services (HCBS) have increased, the gains are uneven, and some states still face legal challenges to comply fully.

3️⃣ Indiana Families Struggle with New Medicaid Rules

Indiana parents of medically complex children are voicing concerns over new FSSA rules affecting personal attendant hours. The changes, announced last minute, are causing confusion and anxiety among families already dealing with challenging care situations.

Stay informed on these crucial issues impacting families and disabled children by subscribing today.

20/06/2024

Medical Motherhood's News Round Up for this week:

https://www.medicalmotherhood.com/p/supreme-court-declines-to-hear-iep?r=k2won&utm_campaign=post&utm_medium=web

1️⃣ Supreme Court Decision on Recording School Meetings

The Supreme Court declined to hear a father's appeal to video record school meetings about his autistic son's needs. The father argued for full transparency in these discussions, comparing the necessity to record to other government interactions. The case raised important questions about parents' rights and accountability in education.

2️⃣ Alaska's Medicaid Backlog and Lawsuit

Thousands of Alaskan families are caught in a backlog of Medicaid applications, with some waiting months for coverage. Sierra Ott's family, needing medication for their son's blood clotting disorder, has joined a class action lawsuit against the state. The lawsuit highlights the critical delays in providing timely healthcare coverage.

3️⃣ Maine's Lifespan Waiver for Disabilities

Maine is implementing the Lifespan Waiver to provide continuous care for children and adults with disabilities. This initiative aims to eliminate waitlists and ensure consistent support from childhood into adulthood. However, concerns remain about workforce shortages and housing availability.

Stay informed with the latest updates on these significant issues.

12/06/2024

🎉 Join us in congratulating Lenore Eklund on two incredible years of her monthly cartoon series, "Where is the Manual for This?!" Her witty and creative take on medical mama life kicks off Year Three with the origin story behind the series' name.

Plus:

1️⃣ NPR Investigates the SSI Poverty Trap: Discover the harsh realities facing disabled individuals navigating the outdated Supplemental Security Income system.

2️⃣ Spike in Disability Discrimination Complaints: U.S. schools see a surge in reports—find out why and what it means for students.

3️⃣ North Carolina’s Special Education Funding Overhaul: Potential changes could see funding allocated based on need. Learn how this model might impact students and schools.

👉 Subscribe to Medical Motherhood for quality news and information delivered straight to your inbox every Sunday. Subscriptions are free, with optional tiers of support—our paid subscribers make this work possible!



https://open.substack.com/pub/shastakm/p/where-is-the-manual-for-this?r=k2won&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true

07/06/2024

📰 ADHD Diagnoses on the Rise
According to a new CDC study, 1 in 9 children in the U.S. have been diagnosed with ADHD. The pandemic saw a significant rise in diagnoses, highlighting an urgent public health concern. However, fewer kids are receiving medication and behavioral therapy than before.

🧠 Empowering Neurodivergent Kids
Teaching kids about their unique brain functions can significantly boost their self-confidence and academic performance. A pediatric neuropsychologist shares how understanding their own neurodiversity helps kids with ADHD, autism, and learning disabilities thrive.

⚖️ Oregon Foster Care Settlement
In a landmark settlement, Oregon's Department of Human Services is set to improve its foster care system. The agreement includes working with an outside expert to ensure better placements, reduce abuse, and provide quality medical and mental health care for the state's 4,600 foster children, about half of whom are disabled.

Stay informed with our latest roundup and support the well-being of all children. 💙👩‍⚕️👨‍⚕️

https://open.substack.com/pub/shastakm/p/adhd-diagnoses-are-on-the-rise-kids?r=k2won&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true