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Self-Determination Network News: June 2024


By SD Network, 2024-06-20


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Self-Determination Network News:

June 2024

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Registration for the 2024 Self-Determination Conference Opens in July

The 2024 Self-Determination Conference will be held October 21st-23rd at the Kalahari Resort in Wisconsin Dells. It's one of Wisconsin’s biggest (and most amazing) event for people with disabilities and the people who support them. Last year, over 800 people attended the conference! This year’s theme: A Seat at the Table: Nothing About Us Without Us! will help people with disabilities have a voice in supports they need to lead a more Self-Determined live. Registration will open in July. We'll be sending out a message when registration is available. Stay tuned for details! 

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InControl Wisconsin's Caring Across Cultures Project

InControl Wisconsin, with a grant from the Department of Health Services, is developing Caring Across Cultures (CAC), a web-based learning experience for older adults and people with disabilities who employ direct care workers, and for direct care workers.

 

The CAC courses focus on how individual differences, like race, ethnicity, language, family history, and other factors can make it more difficult to develop good working relationships. The Caring Across Cultures courses provide information and activities that will help employers and their workers understand their differences and develop better relationships with each other.

 

The CAC will be available to any employer and direct care worker on the web in September, 2024. Now, the CAC team is looking for people to test the learning modules and provide feedback. They are especially interested in individuals with disabilities, family members, and direct care workers. The testing can be done from your home, via a video call. It will take no more than 60 minutes. If you, or someone you know, is interested, please contact Dave Verban at dverban@inccontrolwisconsin.com.

Join an Upcoming Lunch & Learn Webinar about Voting 

Constitutional amendments will be on the ballot again in August. Changing our constitution is  big deal. Join the Wisconsin Disability Vote Coalition's Lunch & Learn on Tuesday June 25th from 12p.m. to 12:45p.m. to learn what they’re about. We  will also talk about how the new maps may impact you, what else is on the ballot, and how you can be prepared. Register for the webinar here.

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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 the vice president of InControl Wisconsin, Julie. This fierce advocate for people with disabilities full-heartedly believes in the true meaning of self-direction and continues to push for change.  Check out this month's Member Spotlight to get to know Julie.   

Who should we shine the spotlight on next?

128 Stacy’s Journal






"Whether we admit it or not, every single person in the world likely has a superhero that they look up to. People with disabilities are no different. Our superheroes may be different than the normal celebrities people commonly think of, but that’s because we often have a different perspective on life."

In this month's journal entry, Stacy opens up about a special superhero in her life and how she continues to look this person for inspiration. Do you have someone like that in your life?






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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:

  • Caregiving Front and Center in the Election: With the election a few short months away, caregivers of all types are seeking better health care options. According to one report,  home health care and child day care are both in the top 10 industries with the largest number of working Medicaid enrollees. Learn why Medicaid expansion would greatly help.
  • Accessible Workplaces: Every year, Global Accessibility Awareness Day brings awareness to the need for digital access and inclusion in the workplace. Read about else should be considered when creating an accessible workplace.
  • Adaptive Clothing Startup: When people pick out what clothes they're going to wear, most take things like the weather, plans for the day, and their mood in to consideration. However, not many people think about how many buttons something has or how hard the zipper is on a certain piece of clothing. For people who have dexterity limitations or physical limitations, things like that really matter. Find out about an adaptive clothing startup in Madison that seeks to resolve those types of problems for people with disabilities.
  • Changes to SSI: The Social Security Administration is making several changes to the Supplemental Security Income program, which will take effect in September. Read about the changes coming.
  • WisCaregiver Connections: WisCaregiver Careers offers a free training for certified direct care professionals and certified nursing assistants. One component of the program is the WisCaregiver Connections online workforce platform that gives hiring providers access to certified workers.  Learn more about  the program.
  • New Accessibility Features: Apple announced a range of new capabilities aimed at making life easier for people with disabilities including an option to control a phone or tablet using only a person’s eyes. Find out what other features are going to be available.
  • Solutions to the Direct Care Workforce Crisis: Experts discussed solutions to improve jobs for the nation’s direct care workers at the National Skills Coalition’s 2024 Skills Summit. Read about some of the ideas that were thought of.
  • Push for Better Healthcare for Co-occurring Conditions: National developmental disability advocacy groups are linking multimillion-dollar partnerships with some big players in health care in a push to better address co-occurring conditions.  Learn about what groups are hoping to do.
  • EVV Hard Launch Date: A date for the hard launch of electronic visit verification  (EVV) for home health care services and personal care nurse supervisory visits has been set. Find out when it is.
  • Rebuilding Trust in Healthcare: According to a recent poll, the majority of people with disabilities have negative health care experience. Read about why many advocates feel that it's time for government to step in.
  • The Pink Umbrella Theater Company: The Pink Umbrella Theater Company was founded in 2018 as Milwaukee’s first theater for artists with a wide range of disabilities. Find out more about this unique company.
  • Partners in Policymaking: Partners in Policymaking is an advocacy and systems change training program that develops leaders who are able to work with legislators and communities on policies and initiatives that will support the full inclusion and participation of people with disabilities in all aspects of life. Applications are due on October 4th.
  • SPARKs Grants: Do you have an idea to make your community a better place for people with disabilities? Organize your grassroots group and apply for funding to help make it happen! Find out more about SPARKs grants and apply today!
  • Funding for Transportation: The U.S. Department of Transportation’s Federal Transit Administration announced $7.8 million for 17 projects that will improve public transportation for people with disabilities, older adults, and low-income individuals. Learn about what these grants will support.
  •  Input Needed on the Family Care Waiver: Last year, the Wisconsin Department of Health Services asked members, family, friends, caregivers, providers, managed care organizations, tribal leaders, advocates, and other partners how they can improve Family Care and Family Care Partnership. They used that input to draft changes to the program waivers. Now, they want your input on the draft waiver renewal application. Comments due on July 5th.
  • National Strategy to Support Family Caregivers: The Administration for Community Living announced availability of $2 million to support the National Strategy to Support Family Caregivers. The applications are due August 6th.
  • Researchers Creating a Robotic Arm: Researchers at UW-Milwaukee are creating a robotic arm accessory to increase mobility for people with disabilities. Read about how this arm was created..
  • New Guidance: The nation’s pediatricians are getting new guidance on how to help teenagers with intellectual and developmental disabilities and their families navigate the transition to adulthood. Learn what's included in the guidance.

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.

Input Needed To Support Development of National Plan On Aging

Comments may be submitted until Sunday, September 15, 2024
On May 30, ACL released “Aging in the United States: A Strategic Framework for a National Plan on Aging.” The Strategic Framework captures the opportunities and challenges created by the aging of the U.S. population and defines goals and objectives for addressing critical aging issues. It provides a road map for developing a national plan on aging that will advance best practices for service delivery, support development and strengthening of partnerships within and across sectors, identify solutions for removing barriers to health and independence for older adults, and more.
The Strategic Framework was developed by leaders and experts from 16 federal agencies and departments working together through the Interagency Coordinating Committee (ICC) on Healthy Aging and Age-Friendly Communities, with support from community partners and leaders in the aging services network. In the coming months, the ICC and partners will engage with stakeholders across the nation to explore the opportunities and issues in the Strategic Framework and inform the development of the national plan on aging.
We are pleased to share the first national public input opportunity!
The National Plan on Aging Community Engagement Collaborative, which is comprised of three ICC partners — West HealthThe SCAN Foundation, and The John A. Hartford Foundation — is seeking input from both individuals and organizations on the Strategic Framework and key aging issues. By completing a short online survey, you can help shape the national plan on aging.
Please make your voice heard — and please spread the word to help elevate the voices of older adults and community partners! About the Interagency Coordinating Committee on Healthy Aging and Age-Friendly Communities
Led by ACL, the Interagency Coordinating Committee (ICC) on Healthy Aging and Age-Friendly Communities was established under the Older Americans Act to foster coordination across the federal government and to develop a national set of recommendations on key aging issues.
With first-ever appropriations to support the ICC received in fiscal year 2023, ACL convened leaders and experts across 16 federal agencies and departments to develop the Strategic Framework. The promise embedded in this Strategic Framework, however, extends beyond government coordination. Its vision, values, goals, and actions are intended to create and strengthen cross-sector partnerships and for the betterment of older adults nationwide.
Learn more about the ICC on Healthy Aging and Age-Friendly Communities at ACL.gov/ICC-Aging.
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The nation’s pediatricians are getting new guidance on how to help teenagers with intellectual and developmental disabilities and their families navigate the transition to adulthood. In a policy statement published this month in the journal Pediatrics, the American Academy of Pediatrics is spelling out the steps that physicians should take as children move toward age 18 when they will be legally recognized as adults.

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Stacy's Journal: Celebrating a Hero


By Stacy Ellingen, 2024-06-13

Batman. Superman. Spiderman. Elsa. Belle. Monana. Whichever fictional character it may be, kids often idolize a specific character starting at a young age. As kids get older, those characters switch from fictional people to real-life superstars. Often, teens and young adults have obsession over a famous celebrity or athlete. Whoever the famous person may be, people often look up to her/him because she/he has had a positive influence on their lives. Celebrities and famous people are often referred to as superheroes. Whether we admit it or not, every single person in the world likely has a superhero that they look up to. People with disabilities are no different. Our superheroes may be different than the normal celebrities people commonly think of, but that’s because we often have a different perspective on life.

A few years ago, I wrote about the heroes in my life. I talked about how my family and friends are my heroes. I explained how I consider the assistant who I was blessed to have from second grade through 12th grade to be one of my heroes. All of my family members, especially my mom, dad, and sister, are my forever superheroes because they’ve rallied around me and supported me literally since day one. I wouldn’t be anything without their continued steadfast love and support.

While that journal entry still holds true today (and always will), a few years ago, I was blessed to meet a friend who has turned into another hero of mine. Let me preface this by sharing that I’m utterly embarrassed to admit that in junior high and high school, I deliberately avoided students with intellectual disabilities. This was for obvious reasons---I felt the need to prove my intelligence and wanted to desperately fit in. Looking back, I can give myself grace because I understand why I did it, but how ironic is it that 20+ years later, I tell you that one of my heroes is someone who has an intellectual disability? How experience and education can change one’s perspective!

I first met Cindy Bentley about ten or eleven years ago with I was appointed to the Independent Living Council of Wisconsin. Our paths have crossed hundreds of times since then as we work on many of the same disability advocacy things together. Somewhere along the lines, we became friends. It’s not my place to share all of her story, but this amazing woman is the definition of resilience and self-determination. She had a very rough beginning and spent many years in a state institution.

Recently, I was honored to have been able to attend an event celebrating the 40th anniversary of Cindy not only living but THRIVING in the community. She has done far more than most people will do in a lifetime. She is the executive director of a statewide disability organization and has done more than she even realizes for the disability community.

What I admire most about Cindy is that she’s not afraid to speak up when she doesn’t understand something. It doesn’t matter what the event is or who is there, she will speak up if she doesn’t understand what’s being talked about. She will also go to bat for people who are being mistreated or aren’t getting the support they need. She’s not afraid to make waves to create change.

Admittedly, while I was at her celebration, I had a moment where I sat there looking around the packed gymnasium of people (I probably knew 75%) and just thought how amazing it was that all these people came together to rally around this one amazing individual to help her succeed in the community. The saying, “it takes a village to raise a child” is applicable to adults as well. As I’ve said in past entries, I know that I have a village of people who support me. It was incredible to see Cindy’s village come together to support her.

As we were driving back from the event, I said to my mom, “20 years ago, I wouldn’t have been caught dead at something like that, but that woman has taught me more than any college class ever did. I love her.” It’s really cool to see how perspectives can shift over time. It was really a special event.

I full-heartedly say that Cindy is a hero in my book. As someone with a significant physical disability, I look to Cindy to be reminded of perseverance and inspiration for whatever challenges life throws my way. I’m reminded that almost anything is possible if you put your mind to it. Thank you, Cindy, for being one of my heroes. Please always remember how loved you are!

***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.

UWM researchers are working on a robotic arm accessory that is designed to increase mobility for people with disabilities. Over the last four years, students studying Biomedical Informatics, Computer Science, Mechanical Engineering and Electrical Engineering have been working on this project. This research was partly funded with a grant from the National Institute of Disability, Independent Living and Rehabilitation Research. Researchers say they will test the accessory this summer with actual patients.

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Applications due Tuesday, August 6, 2024
ACL is pleased to announce the availability of approximately $2 million to support statewide implementation of the National Strategy to Support Family Caregivers. ACL will award four cooperative agreements to state units on aging (SUA) to undertake a range of activities in response to this notice of funding opportunity (NOFO). Each project will be fully funded for a period of 24 months with one, 24-month budget of up to $490,000. Each grantee will be expected to focus on implementing at least three (3) of the five goals of the Strategy, as determined by the state’s needs and priorities, including:
  • Goal 1: Increasing awareness of, and outreach to, family caregivers.
  • Goal 2: Advancing partnerships and engagement with family caregivers.
  • Goal 3: Strengthening services and supports for family caregivers.
  • Goal 4: Ensuring financial and workplace security for family caregivers.
  • Goal 5: Expanding data and the use of research and evidence-based practices to support family caregivers.
Successfully implementing the actions and recommendations contained in the Strategy will require the grantees to break down siloes that exist through close collaboration by multiple agencies in the state. In this regard, each grantee will be required to work with their state’s developmental disabilities services agency and at least one other state agency (e.g., state Medicaid, public health, mental health, education, transportation, child welfare, labor, state universities, etc.) or tribe/tribal entity over the course of the project.
The initiative is in keeping with President Biden’s Executive Order on Increasing Access to High-Quality Care and Supporting Caregivers, signed April 18, 2023. This executive order directs federal agencies to take more than 50 actions including those that could expand access to home and community-based services; grow and strengthen the direct care workforce; support family caregivers; and more — giving us a unique opportunity to transform our long-term care systems and mitigate the challenges faced by family, kin, and tribal caregivers.
An informational call for prospective applicants will be held on Thursday, June 20, 2024, at 2:00 PM ET.
  • Phone number: 800-475-0448
  • Passcode: 3985831
View more details and application instructions
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Member Spotlight: Julie


By SD Network, 2024-06-11

My Photo.pngMeet Julie. This fierce advocate for people with disabilities full-heartedly believes in the true meaning of self-direction and continues to push for change. She’s involved in several projects and groups around the state working to improve things. She encourages everyone to let their voice be heard. We’re so fortunate to have her as member of the Network!

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

Julie lives in Brookfield in Waukesha County. She has been married to a great guy for 32 years, and they are the parents of Kathryn, an amazing self-advocate who is 28 years old and their son Andrew who is 30 years old. “Both of our kids work and live on their own and have great lives,” she  says.  She explains that she has been advocating for people with disabilities since Kathryn was born, and it has become a very big and important part of her life.  

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

Julie shares that since the day Kathryn was born, they have been committed to creating a sustainable life for her that was as much like that of a person without a disability as they possibly could.  That is really started her life as a disability advocate. When her daughter was a year old, she sat on their county Developmental Disability Advocacy Committee (DDAC); when Kathryn entered school, Julie got involved trying to create the most inclusive opportunities for her and other students with disabilities; in 2014, she did the life-changing Partners in Policymaking training and the following year their Partners group founded Save IRIS. “Unbelievably, we were able to actually save IRIS,” she exclaims!  From that point forward, she has been very active on the state and local level to promote full community participation, meaningful self-direction in Medicaid LTC, inclusive, and community-based housing.  She also sat on the WI Rehab Council.....  Currently, she is the vice president of InControl Wisconsin, sits on Survival Coalition, is working to transform Save IRIS into a self-advocate-led grassroots issue action team, and is participating in creating a report to address the deterioration of self-direction in the WI IRIS program.

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

For Julie, self-advocates, families and disability advocates are the good news!  She believes that people with NO LIVED EXPERIENCE and very little appreciation for what true self-direction means and just how difficult it is to live with and manage a life with disability are making too many decisions that negatively impact people's lives! “Our community has the strength and determination to have a positive impact. We just have to come together and become a unified voice for positive change, full citizenship and dignity within the service delivery system,” she tells us.

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

Julie encourages everyone to make your voice be heard! She has two important suggestions on how to do this:

  1. Don't assume that what your IRIS consultant tells you is correct when it comes to building your self-directed life.  Challenge them; insist on a sustainable community-based life; call the ombudsman program;
  2. Give public comment at the IRIS Advisory Committee meetings (4th Tuesday of odd numbered months usually around 10:00 am).  You get 3 minutes, so write up your comments, and tell them what works, what doesn't and what can be done to make IRIS work better for you. You have no idea how important this is!!!  Also, consider applying for a position on the committee!

What are some of your hobbies?

Julie loves to garden!  Mostly flowers, both perennials and annuals she says. The past few years, she has started growing vegetables too and it's been really fun learning how to do this while growing good food we can use! She loves to walk, hike, cook and hang out with all the wonderful people she knows and loves!  “There just never seems to be enough time to do it all,” she tells us!

***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.

 

Request for Public Comment

Last year, the Wisconsin Department of Health Services (DHS) asked members, family, friends, caregivers, providers, managed care organizations, tribal leaders, advocates, and other partners how we can improve Family Care and Family Care Partnership. We used that input to draft changes to the program waivers. Now, we want your input on the draft waiver renewal application.

The waivers allow Wisconsin to provide services and supports to help Family Care and Family Care Partnership members stay in their homes and communities.

DHS has made the following changes to the existing 1915(c) waiver:

  • General updates: Changes to reflect current policies and practices and meet federal requirements.
  • Administrative updates: Changes to make Family Care and Family Care Partnership more like other DHS programs. These changes will not impact access to services.
  • Service improvements: Combining, adding, renaming, or updating services to increase visibility and improve access to services.
  • Provider updates: Changes to expand types of providers and options for providers to be qualified.
  • Incident reporting: Describing DHS’ new Adult Incident Reporting System (AIRS).

Public comment is a time to share your thoughts on changes to the 1915(b) and 1915(c) Family Care and Family Care Partnership waivers. Submit your comments by July 5, 2024. You can:

Email your comments to DHS at dhsltcpubliccomment@dhs.wisconsin.gov.Subject: Family Care 1915(b) Waiver Renewal or Family Care 1915(c) Waiver Renewal

Mail your written comments to:Division of Medicaid ServicesBureau of Programs and PolicyAttn: Family Care 1915(b) Waiver Renewal or Family Care/Family Care Partnership 1915(c) Waiver RenewalPO Box 309Madison, WI 53701-0309

You can get paper copies of the 1915(b) or 1915(c) waiver renewal applications mailed to you. To request this, call 855-885-0287.

Find more information about the public comment period, along with the Family Care and Family Care Partnership waiver renewal application, on the Waiver Renewal webpage.

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The U.S. Department of Transportation’s Federal Transit Administration announced $7.8 million for 17 projects that will improve public transportation for people with disabilities, older adults, and low-income individuals. The grants support organizations that coordinate public transportation for underserved groups, allowing them to access healthcare, community services, education, and jobs by building partnerships among health, transportation, and human services providers.

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The Village of Grafton Police Department recently built a sensory room in the department to provide a calming space for those who may be in distress. It includes specific features to help calm individuals. Things such as images of swimming fish projected on the wall, a bubble machine, weighted blankets, and stuffed animals are in the room. The room is available to everyone.

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