Who Cares for the Caregivers?
Plus: SpEd Overhaul Proposed in Va.; Inclusive Parks Require a New Lens; Medicaid Services in Florida Could Expand
The Adventures of the Disability Defender continues!
Did you know that disability services won’t pay for anything that they consider to be a “caregiver convenience”? This phrase is used to deny bath chairs for children who cannot sit upright or ramp conversions for wheelchair users. But since baths and transportation still need to happen… we find a way.
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 roundup
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Virginia Mercury: “Va. lawmakers consider sweeping changes to special education”
Two Virginia lawmakers are proposing sweeping measures to improve the state’s provision of special education services as criticisms from parents and the federal government over Virginia’s compliance with the Individuals with Disabilities Education Act continue.
Sponsored by Del. Carrie Coyner, R-Chesterfield, and Sen. Barbara Favola, D-Arlington, the proposals would create a statewide system to oversee the development and use of individualized education programs (IEPs) for students with special needs, require more training for educators about how to provide inclusive special education instruction, set up eight regional “special education parent support centers” and provide additional specialists to divisions.
“It’s no secret we are failing our students with disabilities in Virginia,” said Coyner during a Jan. 30 hearing on the legislation.
[…] Virginia has almost 181,000 students receiving special education services this school year, an increase of nearly 7,000 students from a year ago. But the state has struggled to meet the demands of students with disabilities.
Virginia has repeatedly been criticized by the federal government for problems with providing special education services. A June 2020 report by the U.S. Office of Special Education Programs determined that Virginia “does not have the procedures and practices that are reasonably designed to enable the state to exercise general supervision over all educational programs for children with disabilities.”
[…]Both Favola and Coyner are asking for $14.2 million over the next two years to pay for divisions’ special education parent engagement specialists and $8.1 million for the creation of the Virginia IEP system, professional development, teacher coaching and eight additional state ombudsman positions.[…]
• From State of Reform: “Florida Senate passes bill aiming to streamline medical services for disabled residents”
A bill that aims to streamline medical services for Floridians with disabilities was passed in the Senate on Wednesday, and now awaits votes in the House.
Lawmakers discussed Senate Bill 1758 during a Senate Committee on Children, Families, and Elder Affairs meeting on Jan. 23rd. The bill would appropriate nearly $39 million in recurring funds to the Agency for Persons with Disabilities (APD) to offer waiver services to individuals who have been on a waitlist for iBudget services. SB 1758 sponsor Sen. Jason Brodeur (R-Sanford) noted that the bill would require the agency to develop and implement an online application process.
“You would think in 2024 we’d have that, but we’re doing that now,” Brodeur said. “And (it) allows an applicant to review the status of their application to respond to any requested information they need to provide. It reduces the eligibility determination timeframes for specific individuals from 60 down to 45 days.”
SB 1758 would require individuals to be better informed of the Consumer-Directed Care (CDC) Plus program, a long-term care program alternative to the Medicaid Home and Community-Based Services Medicaid waiver, Brodeur said.
[…]“It’s not necessarily a matter of enticing,” Mazaeda said. “I’m very adept at being able to hire people for this position. The issue is the rate, and the fact that each support coordinator must have—at a minimum—90 days of a mentor. Every client that comes on to the program gets two support coordinators for the price of one.
The rate (saw) a 10 percent increase last year, but it was on top of a rate that was from 1994. And there’s been a cost-of-living increase of 100 percent since then. So the numbers don’t add up for that to be able to increase the amount of support coordinators that are needed to take people off the waitlist.”
• From Children Nature Network: “Placemaking: How to build kinship and inclusive park spaces for children with disabilities”
[…]As the dad of a daughter who experiences disabilities and as a professional who has spent his career working in National, state and city parks conserving nature and designing parks, I’ve found my professional and personal life at odds. My career path has focused on park planning, park design, visitor experience, land management and environmental conservation. However, much of the great work I believed I was doing in my job seemed to only create additional barriers for my daughter to access nature, from added steps on trails to inaccessible environmental education programs.
Over the years, Lydia has inspired me to think of and conceptualize accessibility in new ways within my professional role as the park planning manager at the City of Boulder, Colorado. She has been a crucial influence in this journey to ensure that not only she, but all children can universally access the many benefits of being in nature.
[…]In one instance, I took Lydia and her younger sibling, Momi, to a nearby park. While Momi ran to the swings, I pulled Lydia’s chair onto a patch of concrete and whizzed her around in a circle to make her smile. However, Momi soon began to cry for assistance on the swings, and I couldn’t reach her with Lydia, as the playground surface was covered in bark mulch, which bogs down her wheelchair. As we ended our playtime, Lydia needed to be changed – but the changing tables in the park bathrooms did not accommodate a 60-pound person. Forced to change her in the trunk of my car, we were exposed to other parents and people heading into the park – it felt shameful. When we finally drove home, I was defeated and both children were in tears. A simple park trip can be filled with barriers that make parents and children experiencing disability feel a painful, sometimes desperate, isolation.
[…]While many outdoor spaces now include ADA paths, these often turn out to be flat, short, and boring. It’s not anyone’s fault – this is the only way designers can meet federally imposed standards for ADA that our forebears campaigned for back in the sixties and seventies. ADA, while invaluable in its time, hasn’t adapted to the changing needs and the growing number of children with disabilities participating in outdoor activities, a stark contrast to the situation 30 years ago.
[…]Observing Lydia’s lived experience and spending time with many of her friends in the disability community has deepened my understanding of how ADA regulations enable access to recreation through predominantly just one sense: sight. Although science has demonstrated that there are nine identified human senses, modern society no longer engages all nine regularly. As a result, we have consistently designed public spaces that focus on the use of our eyes and legs, which ultimately limits all of us in terms of the types of experiences we can enjoy.
[…]The absence of a diverse sensory focus in ADA regulations hinders the creation of emotionally stimulating experiences, to the detriment of all. It’s time for a change. Within the next few decades, we will hopefully see modern materials, technology and improved personal mobility devices increasing access to the outdoors. However, we can take action now to make better use of existing technology to implement infrastructure that goes beyond ADA regulations to engage our wide array of senses, promote diverse experiences and ultimately provide a richer universal outdoor experience for all children.[…]
Editor’s note: If you are involved in designing outdoor or recreation spaces, please consider visiting Mark Davison’s full article (above) as it is a lengthy and thoughtful exploration of all the different ways these spaces can be designed for children with disabilities. Special thanks to his wife, Danae, for sharing it with me. Lydia is such an expressive child, whom I met as a baby and she has had a lasting impact on me.
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