News

With a minor change, Google is making it more obvious to users whether businesses and other public places are accessible to people with disabilities.  Google Maps now displays a wheelchair icon by default on a location’s entry if the place has a wheelchair-accessible entrance. Previously, this information was only visible to users who opted into a feature called Accessible Places.

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Project SEARCH provides vocational training for people with disabilities. The program works to transition high school students into the workforce. Participants learn things such as soft skills and workplace etiquette. Upon completion of the program, participants are on as permanent employees of the specific site where they interned.

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Medical diagnostic care is essential to everyone, including people with disabilities, and often requires people to transfer onto diagnostic equipment, such as examination tables and chairs, for evaluation. Historically, medical diagnostic equipment (MDE) has been, and continues to be, inaccessible to many people in wheelchairs, which can lead to misdiagnosis or barriers to basic care and examinations. The U.S. Access Board has issued a notice of proposed rulemaking (NPRM) on standards for accessible medical diagnostic equipment regarding one provision on the low transfer surface height for certain types of MDE used by patients in a supine, prone, side-lying, or seated position. Public comments for the NPRM are due by July 24, 2023.

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Generally, stock photos often don't include people with disabilities. The Consumer Product Safety Commission is working to change that. The CPSC, the government agency that focuses on accident prevention and has amused the internet for years with its public safety awareness memes on Twitter, recently released some new stock photos that include people with physical disabilities. 

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It's no secret that Wisconsin advocates for people with disabilities and the elderly have been tiredlessly advocating for better pay for caregivers. Advocates are asking for a significant increase in the state budget. Over the last several years it’s been getting harder for agencies and individuals to find enough care workers, but the COVID-19 pandemic escalated the problem to crisis levels. 

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More than half a million Americans with intellectual and developmental disabilities are currently waiting for government funding for long-term care in their homes. Many states are working to clear their waitlists for IDD services by investing in more funding for waiver programs, while others are streamlining the application process or working to recruit more professionals to work in these fields.

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Reliable health data is important to supporting people with intellectual and developmental disabilities (I/DD). Being counted is a health equity and civil rights issue. Although data collection about people with disabilities generally has improved in recent decades, there is still not enough information on how many people with I/DD live in the U.S., how healthy they are, and what things affect their health.  Since 2016, ACL has worked with federal agencies and other stakeholders to address these issues through the I/DD Counts initiative. I/DD Counts is a cross-agency initiative to improve how information about the health of people with I/DD is collected, analyzed, and understood. 
In November 2022, ACL organized a national summit that included people with I/DD, representatives from federal agencies, advocacy groups, researchers, and health care providers. The group discussed progress on its 2030 roadmap for health data equity, remaining gaps, and priorities for the future. The summit focused on six areas: 
  • Data needed by federal agencies
  • Data needed by advocacy groups
  • What federal agencies are doing to improve data
  • What other organizations are doing to improve data
  • How to share information from improved data
  • Tools and skills needed to use improved data
This report summarizes the key ideas from the summit and actions recommended by and for the I/DD Counts initiative. 
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 the Centers for Medicare & Medicaid Services (CMS) announced in a national coverage decision that Medicare will now cover seat elevation devices for power wheelchairs. This decision follows years of advocacy by disability and aging organizations. Seat elevation devices are critical to power wheelchair users who use them to perform activities of daily living, such as transferring to and from their wheelchair, preparing food, and dressing. Beneficiaries will be responsible for applicable cost-sharing.
The decision by CMS follows a formal request from the Independence Through Enhancement of Medicare and Medicaid (ITEM) Coalition and other supporting organizations. Their request was supported by public input from numerous individuals and aging and disability organizations and the National Council on Disability, an independent federal agency that advises on disability policy. Research funded by ACL’s National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) helped provide the evidence base to inform the decision. ACL and its network of disability and aging organizations will partner with CMS to help make sure wheelchair users are fully aware of this new benefit.
In their request for Medicare coverage, advocates also asked CMS to cover standing equipment for certain power wheelchairs. CMS is considering that request separately. 
Read the CMS Decision Summary
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Self-Determination Network News: May 2023


By SD Network, 2023-05-14


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Self-Determination Network News:

May 2023

Connect Share |Learn http://sdnetworkwi.org


 The Ongoing Caregiver Crisis 

In late April, the Survival Coalition put on a press event about how the ongoing caregiver caregiver crisis is really affecting people's lives. The results of 2023 caregiver survey that the Survival Coalition recently did will be released very soon, and the preliminary results indicate the impact of the care worker shortage has significantly increased since the initial survey was conducted last year. We encourage people to keep sharing their caregiver stories with legislators and remind them that caregiving needs to be a priority in the budget.


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The Self-Determination Network includes some very talented members and we want to help you to get to know each other a little better. Member Spotlight is a great way for us to get to know each other better.

This month, we shined the spotlight on David. This advocate extraordinaire continues to serve his community in any way he can. When he’s not busy serving on one of the many boards he’s on, he’s appraising antiques or officiating weddings. Check out this month's Member Spotlight to get to know David.   

Who should we shine the spotlight on next?

128 Stacy’s Journal

"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.'"

In this month's entry, as her class reunion approaches, Stacy takes time to reflect on her primary education experience. She shares a how she was able to fit in amongst her peers and how some key moments shaped her life! What kind of experience did you have in school? Are you where you thought you'd be today?


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Check out the Latest Videos!

The Self-Determination Channel is a YouTube channel by and for people with developmental or intellectual disabilities. Unlike other channels, the Self-Determination Channel stands stand out from other channels on YouTube because self-advocates host the videos, and decide and create the content. Videos are posted a couple times a month on a variety of topics self-advocates care about such as technology, employment, caregivers, independent living, and advocacy.

Check out the newest videos on the channel:

We encourage you to subscribe to the Channel (you can do so by clicking the red Subscribe button on any of the video pages).

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Take five minutes to check out what's happening on the Self-Determination Network:

  • Five Resources to Advocate for Workforce: Momentum for policy change at the state level continues to grow dramatically for the direct care workforce. Check out these resources to help people advocate for the direct care workforce.
  • Fact Sheet: Recently, the Biden administration announced the most comprehensive set of actions an administration has taken to improve care and support caregivers (including family caregivers). Learn about some of the directives to expand affordable and high-quality care and provide support for caregivers.
  • Care Workforce Not Keeping Pace: Research continues to show that the size of the home care workforce isn't keeping pace with home-and-community-based services. Read about how improving access to HCBS will require not only expanded insurance coverage but also new workforce investment.
  • Supporting People with Invisible Disabilities: Invisible disabilities, as the name suggests, are disabilities that are not immediately apparent to others. Learn about ways leaders can support people who have invisible disabilities.
  • Ending of the Public Health Emergency: The public health emergency from COVID-19 has now ended. Learn about some of the implications this may have on Medicaid HCBS programs, including workforce challenges and reductions in access to care.
  • Wisconsintes with Disabilities Could Help Workforce Shortage: People with disabilities in Wisconsin could help solve the labor shortage, but recruitment efforts often disregard the population. Find out why there's such a mismatch between employers and people with disabilities.
  • Input Needed: The Centers for Medicare & Medicaid Services published a proposed rule, Ensuring Access to Medicaid Services (Access Rule) to improve access to — and quality of — Medicaid services and promote health equity across the Medicaid program. The proposed rule applies to all Medicaid services, including the home and community-based services (HCBS) that are vital to people with disabilities and older adults. Comments must be received by July 3.
  • The Influence of Disability in a Changing World:  Change is inevitable yet within the arc of the disability narrative we have seen profound transformations happening over years starting with civil rights to the evolution of business, representation, and a revolution through a broad cultural zeitgeist that is redefining our understanding of the disability experience. Read this interesting reflection.
  • Report on Equity and Access: 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. Learn what it revealed.
  • New Funding to Support Family Caregivers: The Administration for Community Living recently announced a new funding opportunity for an initiative to support family caregivers. Applications are June 26th.
  • Advisory on Loneliness and Isolation: A new advisory notes that older adults and people with disabilities are among the populations with the highest numbers of loneliness and isolation. Find out what recommendations are suggested.
  • Fall Internship Opportunity: The American Association of People with Disabilities is seeking applicants for their fall internship program. The internship program places students and recent graduates in a paid program that builds leadership skills, explores career opportunities, and enriches connections in the disability community. Applications are due June 8lth.
  • Bipartisan Bill Would Eliminate Derogatory Language: A new bipartisan bill is going around that would eliminate "outdated and derogatory" language on intellectual disability from federal law. Learn more about this bill.
  • Bill Focusing on Strengthening Direct Care Workforce: A group of lawmakers has introduced legislation that not only focuses on improving conditions for professional caregivers, but family caregivers as well.  Find out what this bill would do.
  • Improving Air Travel: For many years, flying has been challenging for many people with disabilities. Read about a bill that would track damaged mobile aids and start research on designing planes that would allow people to stay in their mobility devices while flying.
  • Addressing Disability Discrimination in Health Care: 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. Read about how advocates are pressuring lawmakers to urgently update regulations related to the Rehabilitation Act.
     

128 Upcoming Events 

Here's a sample of upcoming events listed on the Self-Determination Network:

Post your event on the Self-Determination Network and it can be included in future Network News emails to members! Questions? Suggestions?  Contact Stacy Ellingen. 

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The Self-Determination Network is powered by InControl Wisconsin and supported financially by our members and Sponsors. We couldn't keep this Network going with you!  Find out how you can help support the Network.

 

Member Spotlight: David


By SD Network, 2023-05-10

david.jpgMeet David. This advocate extraordinaire continues to serve his community in any way he can. When he’s not busy serving on one of the many boards he’s on, he’s appraising antiques or officiating weddings. This sports lover is involved in many exciting projects—including writing a book. We’re so lucky to have him as a member of the Network!

What's your story?  Tell us a little bit about yourself.

David is a 41 year old self-advocate. He shares that when he was 13 months old, he contracted a strep infection that his body couldn’t fight. He had a compromised immune system which mutated into full-blown arthritis. He doesn’t let the daily constant pain stop him from leading a successful life. He uses a power wheelchair and has found a treatment that works for him.

He lives in his own home and has lots of technology equipment in place to help him in case of an emergency. He also has an accessible van that he drives independently. This allows him to be an active member of the community. He had held several different jobs and has served on various disability advocacy boards.

In addition to his work in advocacy, David appraises antiques and used goods. he’s also a registered officiant and performs various types of religious ceremonies. He is working on writing a book about his life story as well. He lives in Richard County and is involved in mediating and relationships. “We all watch out for each other and help in any way we can” he says.

How are you involved with self-determination? Why did you join the SD Network?

Although his professional advocacy journey began in 2009, David began advocating for himself when he was a young child. He shares that when he was young, he allowed to come to his doctor appointments to learn about his condition. He also, when asked, points people in the right direction and shares how he overcomes his struggles in hopes to steer them in the right direction in their journey. “Sometimes it’s some of the most important jobs that involve no pay that are the most notable and rewarding in this world. Through my positions I do not seek fame and recognition, I only seek solutions and viable means of maintaining programs and funding for my state and local community,” he tells us.

Currently, David is the Chairman for the Richmond County Commission on Ageing and Disabilities Board, Chairperson of the Aging and Disability Resource Center of Eagle County Governance Board, and Vice President for the Movin Out Board of Directors. He’s also a member of the Inclusa/Family Care Grievance and Appeals committee.

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determinations?

David is excited about all of the projects he’s working on. “Stay tuned,” he says.

What tip or resource would you like to share with people who want to be more self-determined?

David left us with the following quote and we didn’t want to paraphrase it because it’s so good.

For every good day that I have there are usually two not so good days to go along with it. The key to my success is surrounding myself with enough positivity to overcome the negative events that take place in my life. Always have goals and dreams no matter how far out of reach they seem. As we age things are bound to progress in the wrong directions making things harder. Tendons will stretch, muscles will atrophy, pain will be in plenty dished out as three square meals a day. Even still I shall trudge on at all cost. Adapt and overcome. No matter the odds never give up, for life is so short anyway and there are so many wonderful treasures this life has to offer.

What are some of your hobbies?

In his spare time, David enjoys watching sports, going deer hunting, watching the sunset over the Wisconsin River, and, most importantly, spending time with his three dogs. “They keep me company and are always there,” he says.

***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.

 

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