News

Two years after the feds suggested that they were going to update regulations to prevent health care providers from discriminating against people with disabilities, but advocates are still waiting for that to happen. Disability advocates are pressuring the U.S. Department of Health and Human Services to act urgently on updating regulations related to Section 504 of the Rehabilitation Act.

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For many years, flying has been challenging for many people with disabilities. Mobility equipment often gets lost or damaged during the process of either loading or unloading the plane. The Mobile Act would track damaged mobility aids and spur research on designing planes that allow passengers to stay in those aids when flying

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A group of lawmakers has introduced legislation that not only focuses on improving conditions for professional caregivers, but family caregivers as well. Broadly, the Supporting Our Direct Care Workforce and Family Caregivers Act would make way for the recruitment, training and retention of professional and family caregivers. It would do so via grants and other initiatives.

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Federal law should reflect the time in which we live and not include harmful words or slurs. The Words Matter Act will modernize our laws, and remove offensive language from the U.S. Code.

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This week, U.S. Surgeon General Dr. Vivek Murthy released a new advisory to warn the American public about loneliness, isolation, and disconnection. Loneliness and isolation are widespread, with approximately half of U.S. adults experiencing loneliness. The advisory notes that older adults and people with disabilities are among the populations with the highest prevalence of loneliness and isolation. Such disconnection can have profound effects on mental, physical, and societal health.

The advisory lays out a National Strategy to Advance Social Connection and includes recommendations that individuals, governments, workplaces, health systems, and community organizations can take to increase connection in their lives, communities, and across the country.

Because the protection provided by the COVID-19 vaccine fades much more quickly for people 65 and older and people who are immunocompromised, the Centers for Disease Control and Prevention (CDC) updated its COVID-19 vaccine recommendations to allow an additional an dose of the updated (bivalent) vaccine for these populations.

CDC also simplified its vaccination recommendations for everyone else. Everyone six and older should to get one shot of the updated bivalent vaccine, regardless of whether they completed the original vaccination series.

Not sure if you need one?

• No matter how older you are, if you have not gotten a shot since September, you definitely need one!
• If you are 65 or older or if you are moderately or severely immunocompromised, it may be a good idea for you to get an extra dose of the bivalent vaccine. Talk to your healthcare provider or pharmacist to decide whether it makes sense for you.

Getting vaccinated and staying up to date continues to be the best way to prevent serious illness and death due to COVID-19. CDC’s website has more details on current recommendations.

1. Improved awareness of and outreach to family caregivers.
2. Inclusion of family caregivers in the care team.
3. Services and supports for family caregivers.
4. Financial and employment protections.
5. Data, research, and best practices.

This initiative creates an unprecedented opportunity for the aging and disability networks to build new partnerships with organizations in other fields that can help drive innovation in these areas. A wide range of public and private organizations are eligible and encouraged to apply, so please share this announcement broadly.

Awardees will be expected to collaborate with ACL on all activities and to align their work with the strategy and its companion document, First Principles: Cross-Cutting Considerations for Family Caregiver Support. 

The initiative is in keeping with President Biden’s Executive Order on Increasing Access to High-Quality Care and Supporting Caregivers,  signed April 18. This executive order directs federal agencies to take more than 50 actions making affordable, quality childcare more available to working families; expanding access to home and community-based services; growing and strengthening the direct care workforce; supporting family caregivers; and more — giving us a unique opportunity to transform our long-term care systems and mitigate the challenges that family caregivers face.

Complete details and application instructions are posted on Grants.gov. Applications are due Monday, June 26, 2023.
 

ACL will host an informational conference call this Thursday, May 4, 2023, at 2:00 PM ET.

• Call-in number: 800-779-3216
• Passcode: 3818865#

“Remember when this happened?” “Remember when that happened?” Can you believe we did this?” ”Can you believe we did that?” Whether it’s a dinner party with friends, a random family gathering, a class reunion, or another social event, as adults we often find ourselves reflecting on the past. Reflecting is an almost unavoidable part of life. Depending on the circumstances, sometimes it can bring up unpleasant or hurtful memories, but oftentimes it brings back joyful or funny memories. Reflecting also makes us think about all that has happened and how far we’ve come. I can’t speak for others who have different abilities, but I love to reflect. Especially when things get hard and seem impossible, thinking and talking about my past helps me realize how far I’ve come and ignites my ambition to keep fighting.

“I, Stacy Ellingen, leave wondering what the actual speed limit is in the halls of Fondy High?” A class officer recently posted our Class Will in our class Facebook group as we get ready for our 20-year reunion at the end of this month. I have no recollection of putting that the will, but, when I read it, I thought it was hilarious! 20 years. I find myself wondering how that can even be possible. Sometimes, it feels like it was forever ago, but often, it seems like it yesterday. I can’t believe it’s been 20 years!

As the reunion approaches, I find myself reminiscing on my primary education. I was enrolled in the school district for 15 years. I started in Early Childhood programs when I was three-years-old (and I was in Early Intervention programs before that).  As I’ve explained in past entries, I was enrolled in regular kindergarten class when I five. From that point on, with the exception of a few modified gym classes sprinkled in throughout the years, I was in all regular education classes. I had a one-on-one assistant who helped me in the classroom. From second grade on, I was incredibly fortunate to have the same assistant with me until I graduated. Now that I’m working in the disability advocacy field, I realize just how rare that was. This special lady made my school years all they could be. We say it was meant to be because we were partners in crime! 😊 I contribute so much of my success to her—I’m confident that I wouldn’t be where I am today without her!

Since I was in all regular classes all the way through, my peers got to know me and understand that I was just like them except that my body didn’t work like theirs. Like every other kid, I made friends. Did it take some effort to be friends with me? Of course, it did, but know what? Kids did it on their own. I was never involved in any social skills group or anything—my classmates and I figured it out. Was everyone my friend? Heck no, but kids aren’t friends with every single classmate.  People in my classes learned how I did things and understood that my assistant was only there to help me physically. They saw me fail tests and occasionally get a bad grade on an assignment, but that proved to them that I was just like them.

As I’ve explained in previous entries, I contribute a huge part of my primary education to being involved in extra-curricular activities. This is largely thanks to my parents. For a few years in elementary school, my mom was a Brownie leader so that I could participate in that. In sixth grade, I was part of a chorus.   Saying that now, I realize it sounds kind of funny because I’m nonverbal and obviously can’t sing for the life of me, but, at the time, it didn’t even cross my mind; I was with my friends and that’s all that mattered! In junior high, I was part of the Junior Optimist Club for awhile (in fact, I was even a grade representative one year). In high school, I was involved in POPS (Power of Positive Students) for a year and then I got involved in Student Council my last two years. Again, physically, I wasn’t able to contribute very much, but I could participate in activities. Most importantly, I had social interaction with my peers. Another thing that really helped me fit in was that I attended all the school dances. I also attended almost all of the football and basketball (boys and girls) games in high school. It further showed my classmates that I wanted to fit in.

Did I receive some special recognition at the end of my senior year? Yes. I received a sportsmanship scholarship from a very special family. I was also invited to the senior sports banquet where I received a sportsmanship award. I think some of the coaches played a large role in it behind the scenes, but I was told it was voted on by the athletes. To date, that’s one of the most memorable moments of life. There was something really special about being the only non-athlete being invited to the sports banquet and then receiving a standing ovation from your peers who are amazing athletes. It’s something I’ll never forget.

Not to sound too nostalgic, but my graduation was unbelievably special. I had been in school for 15 years and people understood what an accomplishment it was. I had special connections with many people in the district. I knew it was an end of an era. It didn’t hit me until after the ceremony when my assistant and I were literally running through the halls of the high school and catching the elevator up to my homeroom where I received my actual diploma. At that point, I had no idea what my future held and I wasn’t worried about it. I was ready to take on the world!

20 years later and here I am. I don’t think I had any expectations back then. However, I would have never dreamed of where I am today. We had a 10-year reunion, and, at the time, I couldn’t believe everything that had happened in 10 years. However, I think more has happened in these 10 years than the first. At our last reunion, I had just graduated from college and moved into my apartment. I didn’t have a job and wasn’t involved in any sort of advocacy. I had an agency doing my cares. A lot has changed in 10 years! Will these things seem significant when I tell people at the reunion? Probably not, but that’s okay.  It’s important for me to remember how far I’ve come.

What will happen in the next 20 years? That’s a very scary thought. I won’t get into it in this entry, but the reality of the future has recently slapped me in the face. I’ll just say it’s too frightening to think about at the moment.  I’m beyond amazed and proud of what I’ve been able to accomplish in the last 20 years. I don’t know what I expected, but never in my wildest dreams did I think I’d end up where I am today. Do I wish that could accomplish other significant life milestones like many of my classmates have? Of course, I do, but desiring those things shows how “normal” I am. Will those special milestones ever happen for me? Maybe. Maybe not. For now, I’m trying to enjoy life to the fullest and not get too caught up in what’s next!

***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 new report examines current research on equity, inclusion, and access for the 61+ million individuals in the United States with disabilities in key social determinants of health including employment, transportation, healthcare, and education. This report serves as a benchmark to measure future progress in achieving civil rights for the disability community.

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