News
NATIONAL ACADEMY FOR STATE HEALTH POLICY: Strengthening the Respite Care Workforce
By SD Network, 2025-10-31
The direct care workforce is one of the fastest growing occupations in the U.S. — with statistics showcasing a projected 772,000 new jobs by 2034. Respite care providers are integral to the overall workforce as they provide caregivers a much-needed break. As an emerging innovation from NASHP’s Caregiving State Policy Learning Collaborative, state governments have made investments in supporting family caregivers — including the provision of respite care. Research has found that when older adults’ caregivers receive supports that include respite, caregiver outcomes improve, older adults’ nursing home placement is delayed, and hospital readmissions and emergency room expenditures are decreased. The insights shared in this paper offer states examples to strengthen their respite care workforce to help ensure that caregivers have access to high-quality respite care.
64% of Wisconsin nursing home residents rely on Medicaid for their care. Wisconsin's Department of Health Services estimates billions in additional state costs if federal Medicaid reductions move forward. But if Medicaid funds shrink, Wisconsin programs like Family Care and IRIS (Include, Respect, I Self-Direct) will feel it too. Home health agencies already run on thin margins, and cuts or restrictions on how states raise funds mean less flexibility to protect home-based services. A recent analysis by state disability and aging organizations warned unpaid caregivers in Wisconsin will shoulder even more responsibility if Medicaid reductions go through.
FAMILY VOICES, INC: Call for Proposals for the 2026 Family Voices Leadership Conference!
By SD Network, 2025-10-31
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The theme of the 2026 Family Voices Leadership Conference is Our Voices, Our Stories: Centering Children and Families in Systems of Care. The virtual conference brings together a community of family and youth leaders, Family Voices Affiliate Organizations, patient and family advisors, and other professional partners and stakeholders from across the country. We are seeking proposals for sessions that will help attendees reach and serve families, youth, and professionals working to improve systems or operate an effective family-serving organization. We are particularly seeking session proposals that:
IMPORTANT DATES Preconference: April 13-14, 2026, 9-5pm ET Main Conference: April 15-16, 2026, 12-6pm ET Proposals are due on December 19, 2025. |
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What's your story? Tell us a little bit about yourself.
Meetra is an author living with Spina Bifida. Her first book is entitled, Dis-ability to This-ability, and it can be found at Amazon, Barnes & Noble, Walmart, Kindle, and here.
She also works as a Community Support Manager for adults with disabilities.
How are you involved with self-determination? Why did you join the SD Network?
Meetra explains that she has always strived to push herself and challenge what she’s capable of doing. She wanted to join because she wanted to continue putting herself out there and helping others challenge themselves.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Meetra shares with us that she’s working on her next few books and she has a few speaking engagements lined up. She has also started an adaptive fitness group class at Peter Kraus Fitness.
What tip or resource would you like to share with people who want to be more self-determined?
“You can start anywhere, from the smallest aspect,” she tells us. She explains that staying in your comfort zone does not allow us to grow and thrive.
What are some of your hobbies?
In her free time, Meetra enjoys writing, participating in adaptive fitness, and watching movies. She also loves mentoring others with disabilities and volunteering with dogs.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
Can I add you as a friend on Facebook? Do you follow so-and-so on X or Instagram? Did you see what he/she just posted? Did you get this snap? Did you see the Tiktok about this or that? Like it or not, questions like these have become part of normal conversation in today’s world. Like it or not, social media has become a prime source of communication in our society. There is a wide spectrum of how much people use all of the platforms that have been developed. While some people avoid it at all costs, others literally make a living from it. It not only is a source of entertainment, it has become an information enterprise for everything imaginable. Social media has opened up a world of opportunities for people—especially those who have disabilities or health conditions.
“What did you post now?” my mom used to frequently ask me when she’d get a random call from my grandmother. Yes, my late grandma was an avid Facebook user. I don’t know which of my cousins helped her set it up, but she absolutely loved being able to see what all of her grandchildren were up to. She’d comment on nearly every single thing I’d post. I think she especially liked it because it gave her a way to connect with me since she couldn’t talk with me on the phone. I remember when I first got Facebook. It was my second or third year of college and my friend came into my dorm room and asked if I had heard of Facebook. I hadn’t, so she helped me set my profile up. At the time, I didn’t think much of it as it just seemed like the cool thing for college students to do. I started adding a couple friends from high school and it was fun to reconnect.
It wasn’t until summer when I was at home that I began to realize what opportunities Facebook had for me. As more and more features were added, I learned just how beneficial Facebook would be. Not only is it a way for me to connect with friends and family, it’s a social outlet where I can express my thoughts and feelings. This is where it has gotten me in trouble. Having significant physical limitations and also not being able to verbally speak leaves me pretty isolated—it’s just a fact. Facebook has become a prime source of socialization for me. Although, I’ve gotten much better about not venting and over sharing, especially in the early years, I used it to vent about my problems or feelings. There were many times when my mom would get a call from grandma asking what was wrong or what my “status” (that term isn’t really even used anymore) was about. Admittedly, I was the queen at vague-booking—I’d post something vague and then not give details or reasons why I said that? Why did I do that? Was I seeking attention or pity? I’m embarrassed to admit it, but probably. I try not to do that too often anymore, but I do slip up once in awhile.
Facebook has also allowed people with disabilities to connect with each other. I belong to many cerebral palsy groups and I’ve learned so many things from them. From tricks how to make toilet seats more stable (yes, that was topic because so many people with cerebral palsy have problems with toilet seats breaking), to side effects of medications (that doctors may not be aware of), those groups a source of a lot of information. There are also Wisconsin specific disability groups that I belong to. Obviously, I think everyone reading this probably can guess that those have been pretty active lately with all the changes happening, but, even before, they were a great resource for people navigating the disability system. We’re able to share experiences, resources, and help each other out. It’s pretty neat.
In recent years, I’ve used many job groups on Facebook to recruit caregivers. I’ve actually found quite a few workers in groups. Until a few months ago, I used a private group to communicate with all of my workers. The only problem with that we that I had to be “friends” with all of the people who I hired. It never turned into a big issue, but it wasn’t ideal. I now use a different messaging app that works pretty well—it’s a little bit more of a professional way to do things which has been working pretty well. My workers’ life can be kept private, and so can mine.
Having said that, though, there were a handful of times when social media has saved the day! A couple of times I’ve noticed that a worker has posted that they’re going out of town or going to be doing something else when they were scheduled to be working with me. We were able to figure it out and avoid a problem, but it just explains how social media can be really helpful in certain scenarios. In other situations, I’ve been able to get some assistance with various things by posting on social media. The example that comes to mind is a few years ago when my straw fell out of my water bottle right away after my worker left in the morning. At the time, I was alone all day, so it was a bit problematic. I posted something to the effect of I was going to be really thirsty that day, and friends commented asking what they could do to help. Someone was able to stop by and help me. Those are just two examples of how Facebook has literally helped me solve problems.
I’ve written mostly about Facebook in this because that is what I use the majority of the time, but people with disabilities use a variety of platforms. Some influencers have made a career out of sharing their story on social media. There are lots of influencers spend hours creating content about their personal lives to share on many different platforms.
Personally, I have a love/hate relationship with social media. Most of the time, I love being able to connect with so many people who I otherwise wouldn’t be able to. I love it; however, admittedly, there are times when it is too much. To no fault of their own, people often post about exciting updates and milestones happening for them and their families. While I love seeing what everyone is up to, some days it’s too much. I selfishly can’t help but wish I could post similar things. When I post about exciting things happening in life, I often wonder what people think. Do people think I’m being too boastful? Will people care about this? Does this sound like I’m provoking pity or praise? On the other hand, though, I know my family and friends enjoy learning what I’m up to. Since I don’t have many opportunities for social interaction, Facebook has become a social outlet. Over the years, I’ve gotten better at finding a good balance. While I’ve learned to refrain from posting most of my negative thoughts and opinions, I’m able to post enough to receive social connections I need.
Will social media continue to be as prevalent as it is today? Probably not, but until the next big technology innovation come into fruition, it gives many people access to a world of opportunities!
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors
A student in the Social Welfare Program at UW-Madison is conducting a dissertation study focused on the experiences of siblings supporting their siblings with intellectual and developmental disabilities — particularly how those caregiving roles and responsibilities change over time. Participation involves a one-time interview (about 60 minutes) over Zoom or phone, and participants will receive a $40 gift card as a thank-you for their time. Participation is completely voluntary.
See this flyer for more information
Sibling study Recruitment Flyer.pdf, 89KB ∞
NATIONAL PUBLIC RADIO: A caregiver's survival guide: Advice from people who've been there
By SD Network, 2025-10-27
Nearly 600 caregivers responded to NPR's request to share their stories, offering practical advice and expertise. The guide covers navigating the medical system, adjusting to caregiving as a new normal, asking for and accepting support, practicing self-care through boundary setting, and managing changing relationship dynamics. The No. 1 advice from caregivers: Get help from support groups, friends, family, therapists, or faith communities, as caregiving is too isolating to do alone.
New research from the National Alliance for Caregiving and AARP finds 63 million Americans, nearly one in four adults, now serve as family caregivers—an increase of 20 million from 2015 to 2025. Family caregivers collectively provide an economic value of $600 billion in unpaid care, yet nearly half experience negative financial impacts.
CBS 58: Milwaukee's Ike Center advocates for more inclusive workforce for people with disabilities
By SD Network, 2025-10-24
The Ike Center has a new campaign launching in Milwaukee this month. It aims to give people with disabilities in our area training and new employment options. The campaign has partnered with several local employers around the area in the hopes of building a more inclusive workforce in the Milwaukee area.
PBS WISCONSIN: 'Here & Now' Highlights: Dr. Dipesh Navsaria, Beth Swedeen, Eric Genrich, Moniquie Minkens
By SD Network, 2025-10-24
Experts sit down and discuss how cuts will impact real people. Everything from special education to food assistance is discussed in this article.