News

Self-Determination Network News:

May 2023

Connect | Share |Learn | http://sdnetworkwi.org

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?

Stacy’s Journal

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:

• What self-determination means to me #SHORTS
• Why I tell my story #SHORTS
• About me #SHORTS
• Ben's Transition Story

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

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.
   

Upcoming Events 

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

• Webinar: Mental Health First Aid In The Workplace: May 16th, 1p.m. to 2:30p.m., Online
• Webinar: Getting The Services You Need From The Waiver – Participant Rights: May 17th, 1p.m. to 2:30p.m.
• Employment First Conference: May 23rd, 9a.m. to 4p.m., Kalahari Resort, Wisconsin  Dells WI
• Webinar: Easy Read Text: June 5th, 3p.m. to 4p.m., Online
• Webinar: Easy Read Icons: July 10th, 3p.m. to 4p.m., Online
• Webinar: Basic Formatting: July 31st, 3p.m. to 4p.m., p.m. 

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. 

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.

Meet 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.

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.

Read more

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

Read more

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.

Read more

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.

Read more

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#