News

What is self-advocacy? In the 1800s, people with disabilities didn't have the opportunity to advocate for themselves. They were placed in institutions or hospitals and were not seen by the world. Big changes came in the 1960s when the civil rights movement started. The Americans Civil Rights Act of 1964 made it illegal to treat people unfairly because of their disability. The Americans with Disabilities Act later required to public services, communication, education, transportation, and other things. To be the best self-advocate is to know what to want and how to receive what you want. This column lists several points to help you advocate.

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Member Spotlight: Brett


By SD Network, 2023-12-22

1000000136.jpgMeet Brett. This fun-loving guy is determined to make the best of life regardless of the circumstances. He is determined to make an impact on as many lives as possible. He is working to change the long-term care functional screen to make it easier for people. We are so fortunate to have him as a member of the Network!

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

Brett shares that he was born three months premature weighing 1 lb 15 oz. Due to this, he has cerebral palsy, but he doesn’t let it stop him. “I am always determined to make it impact in as many lives as I possibly can,” he says. 

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

Brett shows self-determination by not giving up. “I keep fighting every single day of my life. My life may not be perfect, but somebody always has it worse,” he tells us. He joined the Network to make a difference. 

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

Brett is working with legislators and stand functional screen for long-term care. “This isn’t going to happen overnight, but I’m not going to stop until it is changed,” he says.

What are some of your hobbies?

Brett enjoys watching TV and playing video games. He also loves spending time with his family and friends.

***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.

 

ACL is announcing an opportunity for the public to comment on the data collection requirements for the ACL Evidence-Based Falls Prevention Program Information Collection.

This notice solicits comments on the proposed extension of this data collection.
Grantee agencies through this program represent a variety of organization types, including state agencies, area agencies on aging, universities, nonprofit organizations, and tribes. The respondents for this data collection are grantee staff, local staff, and program participants.


The proposed data collection tools include: 
  • Program Information Cover Sheet
  • Attendance Log
  • Participant Information Form
  • Post Session Survey
Comments on the collection of information must be submitted electronically by 11:59 PM ET or postmarked by February 12, 2024.

Submit electronic comments on the collection of information and any questions to Donna.Bethge@acl.hhs.gov. Submit written comments on the collection of information to Administration for Community Living, Washington, DC 20201, Attention: Donna Bethge.
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Everyone loves to travel every once in awhile. People travel to places for a variety of reasons. Traveling is generally fun and exciting, but it also can be stressful. This is especially true for many people who have disabilities. There are several things that people with disabilities have to think about when traveling. Market Watch put together a great guide of tips for people with disabilities.

View guide

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Recently, the Biden-Harris Administration announced actions and new data that will help expand home-and-community-based services. The American Rescue Plan is helping deliver $37 billion across the country to strengthen services. CMS released new guidance outlining how states can use worker registries for HCBS to make sure people have awareness and access to qualified workers.

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The U.S. Census Bureau is considering changing the way it asks people about disabilities and advocates are concerned. Advocates feel it would artificially reduce their numbers by half. This would not only limit the amount of needed resources available, but it would also not accurately count the number of people who are living with disabilities. 

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Recently, the White House hosted care leaders, workers, and champions to discuss new data from the Centers for Medicare & Medicaid Services (CMS) on funding for home and community-based care through the American Rescue Plan. These funds are an investment in strengthening access to home and community-based services (HCBS) across the country. All 50 states are using this funding to improve their long-term care systems. 
At the White House event, Health and Human Services Secretary Xavier Becerra announced that the department, through CMS, is providing additional tools that will help improve access for millions who receive Medicaid HCBS. CMS issued new guidance focused on building and maintaining worker registries so more individuals receiving Medicaid-covered services can receive care in a setting of their choice.
This guidance marks another step toward increased access to quality HCBS so older adults and individuals with disabilities can live safely and independently in their homes and communities.
Read more about how these investments in long-term care and the care workforce expand access to care by investing in our direct care workforce. 
Watch the White House event
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Self-Determination Network News:

December 2023

Connect Share |Learn http://sdnetworkwi.org

Resources for Employing Caregivers 

It's no secret that there has been a caregiver shortage for many years. This crisis affects almost everyone in one way or another. Hiring and retaining workers is challenging--especially for people who hiring their own workers. Applied Self-Directed published a report entitled, Bridging the Gap: Strengthening Insights Into Strengthening the Self-Directed Workforce. Included in the report were a few great appendices about finding and keeping workers. 

Appendix l gives many great examples of where people can try to find workers. It lists different websites that people can post ads on, and it also includes examples of places where people can post ads and flyers in their community. It also gives examples of how people could use word of mouth to recruit caregivers.

In Appendix lll, it talks about many easy ways that people can show appreciation for their workers. It lists many examples of acts of gratitude that don't take a lot of work and don't cost very much. Giving gratitude and having small perks for employees often helps keep them longer.

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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 Randi. This advocate extraordinaire believes that everyone has a right to make choices and encourages people to keep asking questions. Check out this month's Member Spotlight to get to know Randi.   

Who should we shine the spotlight on next?

128 Stacy’s Journal





"People who have disabilities are no different. We encounter many things that are out of our control—in fact, I’d argue that we face more things that are out of our control than the average person does."

In this month's entry, Stacy discusses how many people with disabilities simply have no control over several things that people without disabilities never think about. What unique things in your life are out of your control?





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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).





Recordings from the 2023 Self-Determination Conference 

Video recordings of all the sessions from the 2023 Self-Determination Conference are now available on the Self-Determination Channel on YouTube. The pre-conference sessions as well as the Diehard award presentations are also available. Check out the presentations that you may have missed at the conference!

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

  • Impact of Climate Change: As the planet warms scientists say natural disasters are becoming more destructive and more frequent, and the data shows certain communities are hit harder than others Watch an interview about how it's affecting people with disabilities.
  • Voting Barriers: A recent survey found that people with disabilities continue to face challenges voting. Learn about what some of the barriers are.
  • Unique Duo: Neighbors in Greenfield don't let having Down Syndrome stop them from living successful lives. Read about these inspiring young women.
  • The CARE Act: Organizations advocating for older adults and people with disabilities are hoping to build new support for a bill that would require Wisconsin hospitals to communicate with a patient's family caregivers. Find out more about this bill.
  • Take Survey: The University of Kansas is seeking participants to take the 2023 National Survey on Health and Disability. Take the survey today!
  • Actress Calls for Sub-Minimum Wage to End: Actress Selma Blair recently said sub-minimum wage is "out of touch and wrong." Listen to the interview.
  • Updated Web Content Accessibility Guidelines: Updated Web Content Accessibility Guidelines were recently released. Find out what is new.
  • America's Long-Term Care Crisis: Long-term care systems are in crisis. Learn about steps that could be taken to improve the systems and ease the strain on the federal budget.
  • Proclamation: December 1st was International Day of Persons with Disabilities. Read the proclamation from the White House to learn about what this day is meant to celebrate.
  • Request for Public Comment:  The Department of Health Services (DHS) has revised the Wisconsin Medicaid Standards for Certified 1-2 Bed Adult Family Homes The public comment period is open until January 31st.
  • New Version of Disaster Course: FEMA released an updated version of its training course on Including People with Disabilities in Disaster Operations. Learn more about this course.

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.

 

The Federal Emergency Management Agency (FEMA) Office of Disability Integration and Coordination (ODIC) has released a new version of its training course IS-368.A: Including People with Disabilities in Disaster Operations.

The course is designed for all personnel involved in disaster operations. It provides an introductory overview of information and strategies on how to include people with disabilities during mitigation, preparedness, response, and recovery efforts.

The course focuses on:   
  • The difference between disabilities and access and functional needs. 
  • FEMA’s actions supporting the integration of people with disabilities in disaster operations and ways to shorten the disaster cycle for them. 
  • The differences between equity and equality.
  • Ways to ensure terminology is in alignment with the needs of people with disabilities. 
  • Messaging to ensure inclusivity and accessibility to all emergency managers.
  • Guidance to FEMA staff on how to ensure physical, program, and communication access to the whole community.
The course is live now and can be accessed on FEMA.gov. The self-paced course should take two hours to complete.

Contact FEMA-Disability-Integration-Coordination@fema.dhs.gov with any questions.
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The Department of Health Services (DHS) has revised the Wisconsin Medicaid Standards for Certified 1-2 Bed Adult Family Homes as part of a range of initiatives funded by the federal American Rescue Plan Act. 

You’re invited to review and comment on these updated standards (PDF). These standards help protect and promote the health, safety, and welfare of people who live in these locations.

The standards are being revised to:

  • Clarify roles and responsibilities.
  • Enhance health and safety provisions.
  • Standardize reporting criteria.
  • Include home and community-based services settings rule requirements.

Managed care organizations, county human services agencies, and the IRIS (Include, Respect, I Self-Direct) program use these standards to certify 1-2 bed adult family home providers. Providers must be certified under these standards to get Medicaid reimbursement.

Submit your comments by January 31, 2024. You can:

Division of Medicaid Services
Bureau of Programs and Policy
Attn: Public Comments–Wisconsin Medicaid Standards for Certified 1-2 Bed Adult Family Homes
PO Box 309
Madison, WI 53701-0309

You can get a paper copy of the updated standards sent to you in the mail. To request this, call 877-498-9525.

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