News
WISCONSIN DEPARTMENT OF HEALTH SERVICES: Wisconsin Assistive Technology Advisory Council is Seeking New Members
By SD Network, 2020-01-15
The Assistive Technology Advisory Council is seeking new members to fill vacancies on their roster. If you are a consumer who uses assistive technology (AT), a family member or guardian representing a person who uses AT, or a professional who works with consumers on AT-related issues, and you are interested in providing guidance and direction related to AT products and services throughout Wisconsin, apply to be a member on the AT Council.
The national Recognize, Assist, Include, Support and Engage Family Caregivers Act (the RAISE Act) became law in January 2018. It requires the Department of Health and Human Services (HHS) to develop and maintain a national strategy to recognize and support family caregivers, and to organize an Advisory Council to make recommendations. Now, in preparation for the Advisory Council’s initial report to Congress, HHS is providing an opportunity for individuals and organizations to submit information on the challenges faced by caregivers. This information will help guide the development of the national family caregiving strategy. To offer your thoughts, submit this form by February 7, 2020.
SOUTHWEST ADA CENTER: Complete an ADA survey and help shape the future of the ADA
By SD Network, 2020-01-15
This year is the 30th anniversary of the Americans with Disabilities Act (ADA)!
The Family Care Medicaid program provides long term care to frail elders and adults with disabilities in Wisconsin.The Wisconsin Department of Health Services announced recently the program will be funded through 2024.More than 50,000 people are enrolled in Family Care in the state.
Today, the ABLE National Resource Center (ABLE NRC) released the new ABLE Employer Toolkit. The toolkit consists of resources for employers to share with employees impacted by the additional and often significant expenses that can be associated with having a disability. Toolkit items are downloadable and free of charge.
Even with a well-paying job, employees who have a disability, or employees who support family members who have a disability, often face significant costs to maintain health, independence and quality of life. ABLE accounts are key to “Achieving a Better Life Experience” for your employees with disabilities and their families. An ABLE account can be used to support your employees’ ability to work and to increase their productivity, which results in a diverse, valued and productive workforce. The ABLE Employer Toolkit can help you understand and integrate ABLE into your employee benefits program to support their success in work and life.
Survival Coalition Action Alert: Legislation would offer free online training and better support for family and volunteer guardians, ask your State Legislators to co-sponsor
By SD Network, 2020-01-14
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Disability and aging groups have been working on a bill (LRB 2596) that will help guardians have a basic understanding of their roles, responsibilities, limits of their authority, other important aspects of Wisconsin guardian law BEFORE they are appointed. The bill is currently circulating for co-sponsorship, which means your state legislators are being asked if they would like to add their names in support of this bill. Call or e-mail your legislators (Who are my legislators?) and ask them to sign on as a co-sponsor of LRB 2596. Legislators have until January 21st to add their name as a co-sponsor! Your experience with guardianship as a provider, advocate, family member, person with a disability, or a guardian really helps bring to life how easy-to-understand information can help families, people with disabilities, older adults, and family/volunteer guardians. |
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Quick Bill Summary |
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Many family members who become a guardian do not fully understand what a guardian’s role, responsibilities, and administrative duties are under Wisconsin law. Frequently guardians feel overwhelmed, unprepared, isolated, and unsupported.
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Action Step |
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If this issue is important to you, call or e-mail (Who are my legislators?) your State Senator and State Representative and ask them to co-sponsor LRB 2596 (co-sponsor deadline is Tuesday, January 21st).
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November/December 2019
Connect | Share | Learn | http://sdnetworkwi.org/
During a Hot Topics session at the Self-Determination Conference, InControl Wisconsin board members Lynn Breedlove, Patti Becker, and Kate Norby facilitated a great discussion about self-determination and self-direction. People were asked to write down questions about self-direction. We've compiled them and we encourage people to share their thoughts. We can all learn by sharing our thoughts and ideas with each other. Join the discussion!
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.
The theme of the channel is: Self-Determination is Empowerment. It’s a place where self-advocates can be seen and heard, connect with others, and mentor each other. The hope is that the channel can be used as a teaching tool and show examples of what is possible.
Videos are posted weekly on a variety of topics self-advocates care about such as technology, employment, caregivers, independent living, and advocacy.
Check out the latest videos on the channel:
Tip for National Family Caregiver Month
Respite—A Break for Caregivers
We encourage you to subscribe to the Channel (you can do by clicking the red Subscribe button on any of the video pages).
If you want to be notified every time we post a new video, click on the bell that is next to the subscribe button on Channel homepage.
Then, click the "All" bell.
That's all there is to it. You will now get an email notification every time a video is posted.
2020 Disability Advocacy Day
Mark your calendars! Make certain your voice is being heard by joining us for the 2020 Disability Advocacy Day in Madison on Tuesday March 24th! It's a day designed to connect you with your legislators so you can talk about issues that matter to you. You are the expert in sharing how legislative policies affect people with disabilities in their everyday lives. Registration and additional information will be coming in January.
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.
For November, we shined the spotlight on Tasha. As someone who has always wanted to make a difference in her community, she has worked with multiple groups of people who are in need. Her current job has made her realize how important self-determination is for everyone. Stop by her Member Spotlight to get to know Tasha.
This month, we're shining the spotlight on Phillip. This Oscar trivia extraordinaire has become more involved in self-determination in recent years. He encourages people not to be afraid to advocate for himself/herself. Stop by this month's Member Spotlight to get to know Phillip.
Who should we shine the spotlight on next?
"Can you imagine your life without a computer? Most people now literally spend hours and hours a day on a computer. Although computers can open many great opportunities for people with disabilities, accessing them can often present many challenges." In November's entry, Stacy discussed how the way she accesses the computer has changed over the years and how new technology she recently got may replace her keyboard in the future.
We encourage you to share your thoughts and experiences as well.
Take five minutes to check out what's happening on the Self-Determination Network:
- Wheelchairs on Aircraft: There have been countless challenges with airline accessibility in recent years. Read about a study that the U.S. Access Board doing to assess the feasibility of equipping aircraft with restraint systems so that passengers can remain in their wheelchairs on flights.
- Achieving Health Equality: When it comes to understanding the lives and health experiences of people with IDD, there is still a lot we do not know. Two reports were developed to address the gap. Learn what these reports include.
- Cross-cultural Resources for the Direct Care Workforce: Nearly half of all individuals dually eligible for Medicare and Medicaid receive help with personal care, such as bathing, dressing, managing medication, and other long-term services and support. Check out these resource briefs developed to help providers meet the cultural needs and preferences of dually eligible individuals.
- Transportation Grant Opportunity: The Federal Transit Administration has announced the Mobility for All Pilot Program. This grant program will fund projects that enhance transportation connections to jobs, education, and health services for older adults, people with disabilities, and people with low income. Applications due January 6th.
- The Impact of Climate Change: Climate change effects everyone, but some say the disability community is the most vulnerable to things such as wildfires, hurricanes and air pollution. Learn what people think could be done to help.
- Voting Barriers: Every adult should be able to vote, but various barriers continue to prevent people with disabilities from doing so. Find out what advocacy groups are doing to address these issues.
- Hate Crimes on the Rise: Recently released data indicates that hate crime incidents targeting people with disabilities are on the rise. Read about the specifics.
- Roommate Matching Service: An online service that's believed to be the first of its kind is helping people with developmental disabilities find compatible roommates and settle into homes independent from their families. Learn how this service works.
- Record High Representation: More characters with disabilities are set to appear on prime-time TV this season than ever before. Read about how while this is great news, people with disabilities are still way underrepresented on TV.
- New Law Helps Voters with Disabilities: Governor Evers recently signed a bill into law that removes the requirement for people who are unable to say their name and address because of a disability. Learn what's now accepted.
- State Receives Funding for Housing: It was recently announced that Wisconsin will get more than one million dollars to provide people with disabilities affordable housing. Find out how the money will be used.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Community Resource Network: December 11th, 3:30p.m. to 5p.m., Lakeland University, Milwaukee WI
- Webinar: Finding The Balance: Person-Centered Supports That Honor Both Safety And Dignity Of Risk: December 17th, 1:30p.m. to 3p.m., Online
- Transportation Consumer Advocacy Team (TCAT): December 17th, 1p.m. to 3p.m., Independence First, Milwaukee WI
- Webinar: Supporting Individuals With Intellectual And Developmental Disabilities As They Age: December 18th, 11:30a.m. to 12:45p.m., Online
- Webinar: Celebrating The Fifth Anniversary Of ABLE With ABLE JeoPARODY: December 19th, 1p.m. to 2p.m., Online
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.
What's your story? Tell us a little bit about yourself.
Phillip lives in Madison, Wisconsin. He is a Clerical Assistant at TMG, and has worked there for almost seven years.
How are you involved with self-determination? Why did you join the SD Network?
Phillip is one of the hosts of the newly launched Self-Determination Channel, and he’s also a Buddy Director for his local Best Buddies chapter. He explains that all of this has helped him become more involved with self-determination and being a better advocate for himself and others. He joined the Self-Determination Network to meet others in the disability community, in order to create new friendships and create change in the world. “We all are capable of bringing change, one connection at a time,” he says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
For Phillip, the most exciting thing in Self-Determination that’s happening in Wisconsin right now is the Self-Determination Channel. He feels it gives advocates an outlet or a platform to share their experiences or a story with others who are going through the same thing. He explains that they are looking for others who are interested in having a video on the Self-Determination Channel. “We’d love for you to share your story,” he exclaims.
What tip or resource would you like to share with people who want to be more self-determined?
A tip that Phillip would like to share with someone who wants to lead a more self-determined life is to never be afraid to advocate for yourself. “As people with disabilities we are the best at knowing what we want in our lives and when we need to ask for help. Do not be afraid of saying no and expressing how you feel if someone makes you feel uncomfortable or tries to control what you do, you know yourself best and communication is always the key,” he explains.
What are some of your hobbies?
Phillip enjoys reading, writing, getting together with friends, traveling, and watching movies. “If you ever need someone to help with Oscar trivia then I’m your guy,” 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.
There’s a saying that goes around during this time of year that goes something like this: “as you grow older, your Christmas list gets smaller, the things you really want can’t be bought.” Similar sayings are often shared around social media. Obviously, people share it for many different reasons. Often, it could be the first holiday season without a loved one or a serious medical diagnosis that’s behind the post. The holidays can be hard for many people for a variety of reasons. For some people with disabilities, the holiday season comes with a mixed bag of emotions.
A few years ago, I did an entry about how the stress of the holidays can weigh heavy on people with disabilities. In that entry, I talked about how it can be emotionally hard for many people—not just those with disabilities—to attend all the holiday parties and events. I explained that I happen to be the oldest cousin on both sides, so, as we get older, my cousins do the normal things such as get married and have kids. I’m not sure why—probably because it’s one of the few times everybody is together—but it seems like engagement and pregnancy announcements often happen during family Christmas get-togethers. While I never ever want to take away the couple’s joy of being congratulated and everybody’s excitement for them, it’s very hard to witness. Not because I’m not happy for the couple—I truly am—but because I very selfishly desperately desire those things for myself. Knowing, due to my circumstances, I may never be able to experience those things, is pretty tough—especially when it seems like everyone around you is living the life you dream of.
Major announcements are just one of the things that may cause people to have mixed emotions during the holidays. Another thing that may be difficult for some people is finding topics for conversation. Sometimes, when you have a significant disability or health conditions, you don’t realize how vastly different your life is until you listen to others conversing about their lives. While somebody maybe worried about what color to paint a bedroom in their house or wondering what sports their child will play, I’m quietly wondering to myself which care shifts I need filled for the next week so I can use the restroom and eat. This goes beyond just myself. When we get together with extended family, my parents often find themselves in a similar situation. Especially now, since their brothers and sisters are getting to retirement age, they’re talking about plans to travel all over the place. While my parents would love to travel (probably even more than their siblings), due to my circumstances, they can’t. We try not to think of these situations negatively, but it makes us realize just how different our life Is. I’m in no way meaning to disrespect our extended family either. They do try to understand our circumstances, but, like with anything, unless you experience it first hand, you don’t fully understand. It’s just the way life is.
As the years go on, the extended family Christmas gatherings get bigger and bigger as the cousins have families of their own. Eventually, it’s going to get to the point where the big gathering on each side will stop, and each immediate family will just do their own. This saddens me to think about. Yes, my parents will hopefully be around for many more years, and my sister will always make efforts to include me in her holiday family things; however, I realize there may come a time when I’m not able to be with family during the holidays.
In recent years, social media has added another factor to the stress of the holidays for some people. For me, looking on social media on any holiday is a double-edged sword. On one hand, I love being nosey and looking at everyone’s photos. On the other hand, though, seeing people my age have families of their own makes me wish I had that.
Normally, I’m pretty good at seeing happiness through others, but, very admittedly, the holiday season can sometimes be pretty tough. Personally, nothing on my wish list can be bought, and, it has been that way for many years. I think it’s that way for many adults though. There are many different intangible things people wish for. Some are received; some unfortunately are not. This is all part of this thing called life.
The holiday season brings on different kinds of emotions for everyone. There are many different ways to deal with these. For me, personally, I find it helpful to remember all things I do have and think about all of things I’ve accomplished despite my disability. It’s challenging to do—especially during those tough times—but, we need to focus and make the best of what we do have; not dwell on what could, would, or should have been. All the time, but especially during the holidays, we need to take a moment to be grateful for all that we do have!
***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.
WISCONSIN PUBLIC RADIO: Wisconsin Receives Over $1M To Help People With Disabilities Get Affordable Housing
By SD Network, 2019-12-07
It was recently announced that Wisconsin will get more than one million dollars to provide people with disabilities affordable housing. Housing authorities across the state will get extra Section 8 (a federal rent assistance program) vouchers.