News


President Joe Biden used his State of the Union address to double down on his plan to reinvigorate the nation's home and community-based services system. During the speech, Biden called on Congress to invest in services that allow people with disabilities to receive care in their homes.

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Self-directed care undeniably has a place in the future of home-based care. How big that place is, however, is still up in the air. There are many benefits to offering self-directed or consumer-directed care, especially for patients who would rather be cared for by a caregiver of choice. States see it as a win-win because it lowers the cost of care and gives families their preferred option. Others are concerned about potential fraud and lack of resources. 

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The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) at ACL has a new funding opportunity under the Rehabilitation Research and Training Centers (RRTCs) Program to address community living and participation for people with intellectual and developmental disabilities.

The purpose of the RRTC program, which are funded through the Disability and Rehabilitation Research Projects and Centers Program , is to achieve the goals of, and improve the effectiveness of, services authorized under the Rehabilitation Act through well-designed research, training, technical assistance, and dissemination activities in important topic areas as specified by NIDILRR. These activities are designed to benefit rehabilitation service providers, individuals with disabilities, family members, and other stakeholders.
 

RRTC on Community Living and Participation Among People with Intellectual and Developmental Disabilities: The purpose of this particular RRTC is to conduct research, training, and related activities to contribute to optimal community living and participation outcomes of people with intellectual and developmental disabilities, including those with co-occurring disabilities. 

View more details and application instructions.

Please visit the link above for more details about the grant opportunity and application process. This grant opportunity closes on April 3, 2023.

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Member Spotlight: Amy Bleile


By SD Network, 2023-02-09

ab.jpgMeet Amy.  As both former Miss Wheelchair Wisconsin and Miss Wheelchair USA, this teacher has a passion for education and making policy changes that benefit all people.  She encourages people to never give up and not to let others speak for you.  We’re so fortunate to have her as a member of the Network! 

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

Amy has a master's degree in special education and school social work. In the past, she was a 504 coordinator. Currently, she’s a special education teacher at an elementary school. “I have a passion for education and working with kids and making policy changes that make positive changes for all people,” she says.

She has a two-year-old service dog named Beans. She was Miss Wheelchair Wisconsin and Miss Wheelchair USA.

What does Self-Determination mean to you? Why is it important? 

To Amy, self-determination means living life to the best of her ability. She explains that it's important because it's a weight that everyone has and she thinks we need to do a better job with attendant care, transition, jobs and education for people with disabilities. “The possibilities are limitless when given opportunity but, unfortunately, we are not given opportunities,” she says.

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

The most exciting for Amy is that, even though it’s a struggle sometimes, every day she’s able to live in my own apartment and work a job as a special education teacher--while nagging over 13 specialists, needing attendant care, and not being able to drive.

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

Amy encourages everyone to never give up and don't let people speak for you. “It’s not who you think you are that holds you back, it's who you think you're not,” she explains. 

What are some of your hobbies?

During her spare time, Amy enjoys hanging out with friends, being with her service dog Beans, volunteering, water skiing in the summer, and watching and playing wheelchair basketball. “I’m always an advocate,” she exclaims!

***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.

 


One in four U.S. adults have a disability that affects major life activities. Yet transportation networks, from missing stretches of sidewalk to legacy train systems built long before the 1990 Americans with Disabilities Act, often lack features like elevators that are necessary for people who use wheelchairs, crutches, and other mobility aids. The secretary of transportation talks mobility justice, missing sidewalks and elevators, and billions in federal grants currently up for grabs.

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U.S. Sen. Bob Casey, chairman of the U.S. Senate Special Committee on Aging, and U.S. Rep. Debbie Dingell have introduced legislation to expand access to home and community-based services (HCBS) for adults, people with disabilities and injured workers, while increasing pay and improving benefits for in-home caregivers. 

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 StatsRRTC at the University of New Hampshire's Institute on Disability will release key findings from the Annual Disability Statistics Collection. The annual report addresses critical gaps in national and state data related to people with disabilities by synthesizing complex data from numerous U.S. federal agencies into accessible formats.

"We're getting our first look at post-COVID statistics for many indicators because the collection of 2020 data was corrupted by the COVID lockdown."
– Andrew Houtenville

The ADSC is designed to make finding and using disability statistics easier for individuals working on legislative and other matters relating to persons with disabilities. 

Key findings from this year's Compendium include:

  • The Annual Disability Statistics Compendium
  • Annual Disability Statistics Supplement
  • State Reports for County-Level Data
  • New and Updated Infographics
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Stacy's Journal: Being Valued


By Stacy Ellingen, 2023-02-04

Being a starter on a sports team.  Standing up in a wedding.  Getting a promotion at work.  Being asked to speak at a big event.  What do these things have in common?  Things such as these make an individual feel valued.  Being valued is a psychological need of every single person on this earth.  There are a million different ways to make a person feel valued, and what makes an individual feel that way varies from person-to-person.  Feeling valued, wanted, and needed is essential to everybody.  In today’s society, it’s especially important that people feel valued.  People who have disabilities or health conditions are no different; we need and deserve to feel valued just like everybody else. In fact, sometimes, I believe people who have any sort of limitation have the need to feel more valued because, the truth is, society still doesn’t view us as equal. 

“I know you’re busy, but I’d like to come visit with Parker a day next week.  We won’t stay long.  What day would work best?,” my sister recently texted me.  Nearing the end of her maternity leave with my second nephew and wanting to visit my parents as well, she was trying to find a day to drive up.  Having talked with my parents, they told her how busy I’ve recently become.  After looking at my calendar and texting her back with the few days and times that’d work, I was talking with my mom and I said, “it’s weird that people have to schedule around my stuff. It’s usually vice versa.” What I mean by this is that I’m not used to being this busy.

As I’ve discussed in past entries, I’ve learned the hard way that my body can handle so much.  A few years ago, I took on another very part-time job doing very similar things I do for InControl Wisconsin.  People had reached out to me and encouraged me to apply.  The fact that people thought that I had the right skills and would bring value to the organization meant so much to me.  However, as I explained, a few months into the job, I ended up having emergency surgery.  After doing my best to continue working while I recovered, I discovered that my body couldn’t handle it.  Much to my dismay, after many doctor and hospital visits, I ended up resigning from the position. People totally understood, but it was really hard on me because I knew that people valued me and wanted me to do it.

That was nearly two years ago.  Knock-on-wood, my health has vastly improved and I’ve been on a really good streak.  Because of that, I’ve been able to participate in more activities and take on more responsibilities. I’m not sure of the reason, but it seems like in the past month or so, I’ve been fortunate to have been asked to participate in several different advocacy activities. With almost all of these opportunities, people reached out to me and asked me to participate in the particular activity because they thought I’d add value to the project.  Due to timing, I had to say no to one or two of the things, but I’ve been able to do most of the opportunities.

Having people reach out to me because they think I bring value to something is an unexplainable feeling.  Although, the perception of persons with disabilities has vastly improved, I still constantly feel the need to prove myself.  As I’ve said before, being in a wheelchair, having involuntary movements, and being nonverbal, I know people make assumptions.  I get it—I make them too.  We all do.  It’s human nature to.  Admittedly, knowing this, makes me self-conscious and I find myself always trying to show people that, despite my physical challenges, I can accomplish things and be successful.

Knowing that people value who I am and what I do greatly boosts my confidence.  It does for everyone, but, for people who have blatant stereotypes attached to them, being wanted and needed means a little more. Personally, as I’ve shared before, when I get discouraged or depressed because things aren’t going well or I can’t do something, my mom reminds me of all that I’ve accomplished and of all the people who value me.  Honestly, depending on the situation, often I shrug it off because she’s my mom and she has to say those things; however, deep down, it helps to be reminded.

Being valued greatly improves one’s self-worth.  Everybody benefits from getting a boost of confidence every once in a while. Have you made somebody feel valued recently?  My challenge for you is to make a friend, family member, or colleague feel valued today.  By doing so, there’s a strong possibility that you’ll feel more valued as well! 

***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.


Check out the webpage featuring the Youth Voice Youth Choice Ambassador Program.

Webpage

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The HCBS settings rule requires states to develop a transition plan for reaching and maintaining compliance with the rule. The Wisconsin Department of Health Services (DHS) received final approval on its Statewide Transition Plan from the Centers for Medicare & Medicaid Services (CMS) on January 20, 2023. Read the approved Statewide Transition Plan here. 

Find more information about the statewide transition plan.

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