Most people don't think twice about completing simple tasks such as slicing bread or doing laundry, but for people with disabilities, technology equipment often help them do these basic tasks. Cybathlon is a global competition for people with physical disabilities to compete in performing everyday tasks using state-of-the-art technologies. It isn't a competition, it's used to showcase new technologies available. 

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The briefing paper linked below is a summary of the work done by national Working Interdisciplinary Networks of Guardianship Stakeholders or WINGS. The Administration on Community Living (ACL) provided funding to the American Bar Association (ABA) to administer grants to states. WI did not receive a grant, but under the leadership of Judge Shirley Abrahamson, formed a workgroup and received technical assistance from the (ABA). The WI WINGS group played an instrumental role in passing the WI Supported Decision-Making legislation Wis.Stats.Ch 52. (2017 Wisconsin Act 345), resulting in a Supported Decision-Making Agreement in state statute.

Briefing paper

The Wisconsin Board for People with Developmental Disabilities (BPDD) shares its biennial report with you, highlighting the programs it created and policies it impacted to create opportunities and break down barriers for Wisconsinites living with disabilities. This report highlights how BPDD quickly pivoted this year to address the added health and safety risks and social isolation that the COVID pandemic created, as well as program and policy impacts we had that affected employment, voting, transportation, supported decision-making, self-determination and many other issues important to people with developmental disabilities and their families.

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Meet Anastasia. This talented artist doesn’t let her limitations get in the way of pursuing her dreams. She views her disabilities as side notes, and she loves being an advocate. She encourages people to not only to stay calm and speak his / her mind, but to also use humor whenever possible to lighten the mood and put people at ease. We’re so fortune to have Anastasia as a member of the Network!

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

Anastasia views herself as an artist first, and she views her disabilities as just side notes. “They are issues that I need to handle so I can follow my passion for art and hopefully become a well-known artist,” she explains. To help us to have a deeper appreciation for her art, she shares some information about her disabilities.  When she was born, she had her umbilical cord wrapped around her neck and chest--cutting off the oxygen to my brain. The doctors were afraid that she wouldn’t survive. Luckily, she was a fighter even way back then. The lack of oxygen caused a brain injury resulting in her Cerebral Palsy.

Anastasia uses the latest assistive technology to help her lead an active life. “My mom says I have the coolest toys,” she exclaims! Her communication device tracks her eyes to select the buttons. She explains that when her first physical therapist in grade school noticed that she has the most control over her neck and head, her father started to make her headsticks so she could create 2d arts. “There were many modifications to the headsticks over the years to assist me to pursue my dreams,” she says. 

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

Anastasia joined the SD Network because she enjoys being an advocate for children with disabilities, and seeing them shine in the community.  

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

Anastasia has opened a business to sell her works and to enter into art exhibitions.  She has a webpage, HeadStrongArt.net, where people can buy her works or ask for a commission.  She runs her business at home. She explains that working from home is the perfect situation for her because when she needs something, her aides are right there to help.  She has a drafting table that she drives her wheelchair underneath when she’s creating art.  Usually, she leaves her art supplies set up so she can just pull up underneath the table when she’s ready to work. After her aide places her headstick on her head and gets some paints, she paints independently. She shares that often when she paints, she enters into a meditative state; she can take a break from the world for a while. Right now, she’s working on a new body of work about her life and disabilities. She shares that when she tells people about this idea, often they express that she should paint about a happier subject matter. However, she doesn't view her life and her assistive technology negatively. In these works, she wants to celebrate the assistive technology that helps her to live a full life. She’s also painting portraits that illustrate the whole person showing their disability because she wants to show the humanity of having a disability. “If young people with disabilities would see some more images of people who are similar to themselves, they will be more likely to grow up believing in their potential.  I am hoping by painting portraits of myself and friends who are disabled, I am helping to fill that need in our society,” she says.    

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

Anastasia’s tip for people who want to be self-determined is to stay calm and speak your mind even when people might disagree.  Additionally, she suggests to use humor to lift the mood and to put people at ease.  She also suggests that a great resource for people with disabilities who want to become a leader is the LEND program at the Waisman Center. The class teaches how to be a self-advocate and an advocate for children with disabilities. The main requirement is college experience.  

What are some of your hobbies?

Anastasia enjoys listening to books or music while she paints. She also plays around with writing.  She likes to write short stories and poems. Her other hobbies are being in nature and playing with my dogs.

***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.

Medicaid officials are pushing states to move forward with efforts to rebalance the long-term care services for people with disabilities to favor home-and-community-based services rather than institutions. The Center for Medicare and Medicaid Services recently released a toolkit which includes examples and best practices for increasing transitions from institutions to community, making sure policies align with the market of service providers and improving community living for people who receive Medicaid home-and-community-based services. 

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Can you believe Thanksgiving is in just a few weeks? Where has this year gone? It’s no secret that 2020 will be a year people won’t soon forget. As the holiday season approaches, many people often take time to reflect on the year that has gone by. No doubt that this year was different than we all could have imagined. While most of the issues were undesired, many people found lots of silver linings. In a time where the world is kind of chaotic, there’s a lot of things to be thankful for.  As a person with a significant disability, each Thanksgiving I try to take a few minutes to reflect on the year. Many times, it’s easy to get caught up in the busyness of the holidays, and forget what’s really important. For people with disabilities, it’s so important to reflect on the positives in our lives.

As I begin to think about the year that has gone by, I’m amazed by all that has happened. For starters, in January, I was having so many care problems. I began the process of switching to Family Care in hopes it’d be easier. As it turned out, that wasn’t the case. It was good to learn how it works, but it wasn’t going to work for my current situation. It was very disappointing to find out that there is no real good care program for people like myself. I’m still shocked by this, but it just confirms more advocacy is needed. Timing was impeccable in March when my parents and I decided to start in IRIS. All this was happening right when the pandemic hit.

Everything was shut down in the beginning of March. Most of my caregivers went back to their hometowns because the colleges were shutdown. I’m fortunate that I was able to move in with my parents for three months. If they weren’t able to take care of me, I would have ended up in a nursing facility.  As much as I complained about being at their house on their schedule, I’m very thankful that I was able to stay with them.

When we realized that the pandemic wasn’t going anywhere anytime soon, my mom and I came up with different care shift schedule to try. We interviewed and hired several new workers. I’m very shocked by how well things have been going. This has been probably the best four or five month stretch we’ve had in years. Now, I know that after the holidays, we’ll have to hire some new people because a few of my current workers are moving on, but it gives me hope that this will continue to be doable.

In June, I became an aunt for the first time. As hard as it was emotionally for me, words can’t describe how amazing my nephew is. He brings so much joy to the family. I’m so thankful that I’ll be able to watch him grow up and be part of his life.

I haven’t shared anything about this because I didn’t want people to feel bad, but in September, I had COVID – 19. It ran through most of my workers and I. I had to go to my parents for about three weeks. Thankfully, my symptoms were very mild, and somehow, neither of my parents got it. Coincidently, during that time, I ended up in the hospital with a gastrointestinal issue, but, thankfully, I didn’t need surgery this time.

As weird as this sounds, I’m very thankful that so much has gone virtual this year. As I’ve discussed in previous entries, for me, not having to worry about transportation or cares, I’m able to attend many more events and meetings than I otherwise would have.  Like everyone else, I miss seeing people in-person, but, with everything being virtual, I have more opportunities to participate in things.

The key word is thankful. With so much going on in the world, sometimes it’s hard to see the positives in life. I’m incredibly thankful for the life I have. Things could be so much worse. It’s because of the overwhelming support from my amazing friends and family that I’m able to be as successful as I am. Unfortunately, I know everyone does not have that support. It’s sad to think about and hear stories about people not having that kind of support. Do I find myself still being down and wishing things were different? Of course, I do. However, in those times I have to remember what I have and what I’ve been able to accomplish.

This Thanksgiving, I challenge each of you to take five minutes and reflect on the good things that happened this year. Yes, there were a lot of unpleasant things that occurred, but I’m willing to bet if we truly think about it, the good outweigh the bad.  I believe it’s true - - when bad things happen, it brings out the good in people. This year is the perfect example of it. We need to remember to be thankful for what we have. Happy Thanksgiving, everyone. I’m thankful for what each of you do for the disability community.

***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.

Nearly 1 in 4 voters have disabilities. The Disability Vote Coalition is working hard to help help them vote no matter what the problem is. Everything from transportation to the polls, to absentee ballots not being accessible, not knowing what resources are available... The list goes on. The Coalition provides multiple resources for people with disabilities. 

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Coming Soon! Apply to a New Challenge Competition Starting November 20 for Improving the Direct Support Professional Workforce.

ACL is looking for inventive solutions to strengthen the direct support professional (DSP) workforce and to improve the overall quality of home- and community-based services (HCBS) for individuals with intellectual and developmental disabilities (ID/DD). Our goal is to encourage the development of innovative business models that will help to stabilize the DSP labor market.

The Problem

The DSP workforce provides vital services that ensure Americans with ID/DD have the support they need to live independently in the community. Demand for these essential professionals is at an all-time high and growing. With an average turnover rate of 45% and significant challenges to recruiting and retaining DSPs, the demand far exceeds supply. The University of Minnesota’s Institute for Community Integration estimates there are 1.3 million DSPs supporting individuals with ID/DD. To sustain this level of service at the current turnover rates, 574,200 new DSPs need to be hired into the workforce every year. In addition, at least another 167,000 would be needed to serve individuals who are on waiting lists for HCBS[1].

Due to the lack of stability of the workforce, many people are unable to obtain all of the services they need, which limits full participation and true inclusion in society. It also significantly impacts the quality of HCBS people with ID/DD living in the community[2]. There are multiple reasons for difficulties in attracting and retaining DSPs, including; the rising need for services creating competition for workers, shifts in the types of services needed, low wages, lack of benefits, and lack of training and promotion opportunities.

The Prize Competition 

ACL is seeking innovative business models to overcome these challenges to improve the stability and increase the size and capability of the DSP workforce.

“Every day, Americans with disabilities live, work, learn, grow, and enjoy life in their communities. For many of us, direct support professionals are critical to our ability to do those things safely and freely,” said Julie Hocker, Commissioner of ACL’s Administration on Disabilities. “With this prize competition, ACL is challenging the industry to re-imagine how we recruit, develop, and grow DSPs to ensure that all Americans with disabilities have access to the services they need.”

The competition will include three phases, with cash prizes awarded to winners in each phase. All winners will receive mentorship from experts in the field and winners’ business models will be featured in Challenge materials.   

Phase 1 Submission Timeline

Submissions can be entered starting November 20, 2020, and must be received by 5:00 PM ET on February 12, 2021.

Watch the ACL webpage for more information for additional details – judging criteria and descriptions of the competition phases will be added soon.

Every November, National Family Caregivers Month (NFCM) recognizes and honors family caregivers across the country. Led by Caregiver Action Network, it is also an opportunity to raise awareness of caregiving issues, educate communities, and increase support for caregivers.

ACL is a proud observer of NFCM, but works year-round through programs and councils to engage, support, and empower caregivers. For NFCM 2020, ACL created a special materials page to help you join us as we #RAISEcaregiving next month.

The election is less than a week away. Many people with disabilities face additional challenges when voting. From absentee ballots not being accessible, to polling places not being accommodating, to issues filling out the ballot... The list goes on and on. There is hope from disability organizations that the Wisconsin Legislature will soon improve voting accessibility! 

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