News

According to the National Trends in Disability Employment Year-End Special Edition, 2022 was a remarkable and histrionic year for employment for people with disabilities.  In fact, people with disabilities outperformed their peers without disabilities.  Employment for people with disabilities reached pre-pandemic levels.

Read more

Self-Determination Network News:

January 2023

Connect | Share |Learn | http://sdnetworkwi.org

Disability Advocacy Day 2023

Disability Advocacy Day will be Thursday March 23rd in Madison. We're excited that it will be back in-person! Registration opens February 1st, and we'll be sending out a message with information and a link.  We hope to see you there!  

Wisconsin Courts Matter in the 2023 Election Virtual Forum

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 Jeremiah. With help from his support circle, this very determined self-advocat has worked his way into a great position in the federal government. Check out this month's Member Spotlight to get to know Jeremiah.   

Who should we shine the spotlight on next?

Stacy’s Journal

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:

• Human Rights: #9 Control Your Money
• Human Rights: #10 Free From People Hurting You
• Human Rights: #11 Decide Your Own Schedule
• Human Rights: #12 Go to School
• Human Rights: #13 Get Medicine and Help From Doctors

We encourage you to subscribe to the Channel (you can do so by clicking the red Subscribe button on any of the video pages).

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

• Disability Language Debate: New research dives into the heated debate surrounding the language of autism and finds that preferences about how to describe those on the spectrum vary substantially depending on who you ask. Find out what options are being debated.
• Watch: Watch this great  video to learn more about Project SEARCH.
• Community-Based Services Should be Mandated: A report from the National Council on Disability finds that weaknesses in home and community-based services directly contributed to “needless deaths” among people with intellectual and developmental disabilities during the COVID-19 pandemic. Find out why community based services should be mandated.
• Strengthening Support for Family Caregivers: There are about 53 million family caregivers in the US.  A new report reveals new opportunities for governments to support them.
• Boost in Rural Transit Funding: Late in December, Governor Evers' office announced $5 million in rural transit funding. Learn what the funding will be used for.
• Youth Leadership Forum 2023: The Youth Leadership Forum is a week-long, overnight leadership training and career awareness program at Edgewood College for high school sophomores, juniors, and seniors with disabilities to learn leadership and self-advocacy skills. This year, it's July 9-14. Applications due February 3.
• Transportation Barriers Continue: Transportation barriers continue to one of the main hurdles to employment for people with disabilities. Read about why this is.
• Resolution Approach: Instead of constantly pushing themselves, some people with  disabilities embrace a more relaxed approach to goal-setting. Learn and why some people with disabilities take a different approach to making New Year's resolutions.
• Disability Activist Aims to More Inclusive: When Saphonia Purnell was told that her child had a disability, she decided to make disability rights the center of her world.  Read about how she plans to pull youth  and civic leaders together with the goal of making Green Bay more inclusive and welcoming for people with disabilities.
• Community Transition Services: Community transition services help people with intellectual and developmental disabilities with their move from either an institution to a community setting, or a congregate community setting to an individual community setting. Learn about what these services can help with.   
• Limit Increase for ABLE Accounts: People with disabilities can put most money into ABLE accounts starting this month.  Find out what the limit now is.
• Businesses Need to Hire People with Disabilities: It's estimated that more than 15% of people in the world experience disability; yet very few companies prioritize diversity and inclusion considering disability in their initiatives.  Learn about the several reasons this is.
• University Awarded Grant to Help with Caregiver Crisis: Recently, UW-Green Bay was awarded a grant from the Wisconsin Department of Health Services to help with the caregiver crisis.  Learn about how.
• IRIS Advisory Committee is Recruiting: The IRIS Advisory Committee is currently looking for interested persons to apply to be on the committee. Applications due February 3. Learn more and apply.
• Long-Term Care Advisory Council Seeks Applicants: The Wisconsin Long-Term Care Advisory Council is currently looking for interested persons to apply to be on the committee. Applications due February 3. Learn more and apply.
• Family Caregiver Phone Line: The National Alliance wants to hear from family caregivers. A phone line has been setup to check on the mental health of family caregivers.  Find out how it works.

Upcoming Events

Here's a sample of upcoming events listed on the Self-Determination Network:

• Webinar: Assistive Technology: January 31st, 1p.m. to 2:30p.m., Online
• Webinar: Creating And Fostering Inclusive Wellness And Recreation Programs For Individuals With Disabilities: February 9th, 1p.m. to 2:30p.m., Online
• Webinar: Wisconsin Courts Matter: Wisconsin 2023 Elections: February 9th, 6:30p.m. to 7:45p.m., Online
• Advocacy For Change: March 16th, 9a.m. to 4:30p.m., Concourse Hotel and the Capitol, Madison WI
• Disability Advocacy Day: March 23rd, 10a.m. to 3p.m., Monona Terrace and the Capitol, Madison WI  

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.

Meet Jeremiah.  With help from his support circle, this very determined man has worked his way into a great position in the federal government.  He believes that the best advocate is oneself, and he encourages people by saying “if there’s a will, there’s a way.” We’re so fortunate to have as a member on the Self-determination Network! 

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

Jeremiah shares that he was diagnosed at about the age of three with autism from the Waisman Center in Madison, WI. He was non-verbal and low-functioning at the time.  However, with the strong will power of himself, his parents, therapists, and educators, He was able to become higher functioning on the autism spectrum. “Please note that this process did not happen overnight. I went from school to school as often my needs were not being met to its fullest. Perhaps having gone through so many schools as an adolescent, learning became my passion,” he explains. He graduated from Nicolet High School in 2009. He then graduated from the University of Wisconsin-Whitewater in 2013 with Bachelor degrees in General Management and Political Science.  After that, he earned a Master’s degree in Public Administration from the University of Wisconsin-Oshkosh in 2019.  Since the government system put a lot of time and investment through itself into him, he wanted to give back to the community that has helped him.  He has worked for the U.S. Department of Veterans Affairs in Milwaukee, WI over seven years. He explains that he first started out as a Claims Assistant in 2015. In 2017, he moved into Finance where he primarily did payroll.  In late 2021, he moved further into Finance when he helped to process debt waivers and make decision determinations for our nation's veterans. Most recently, he became a Program Support Specialist for Human Resources.  “If I learned anything, it's that time passed by too quickly,” he says. 

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

Jeremiah’s definition of Self-Determination is “if you want something in life, go get what you want.”  He explains that the best advocate is yourself. No one will have 100% of your best interests in mind except for yourself.  For example, for many years he did not drive even though he had my driver's license.  Part of it was the stress of having to worry about other people, while the other issue was personal finances.  However, on many occasions, he wanted to go somewhere, but couldn't because he didn't have someone to drive him. If his parents could drive him, he tells us that he didn't want them to also be at his friend's party. “I wanted to become more independent.  Being independent means more freedom to me where I do not have to wait for the city bus or for an uber,” he says.  One day, he had enough, and decided to drive himself.  He shares that he first started doing short haul trips and drove just around the suburbs where he lives nearby.  Eventually, through baby steps, he started driving himself further and the rest was history. He explains that he wanted to do something in honor for two of his coworkers that passed away. “They always believed in me that I could drive myself, so I wanted part of their legacies to live on,” he says. 

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

Some recent good news for Jeremiah Is that he was able to become part of Human Resources by becoming a Program Support Specialist.

The other piece of good news for him is when he was able to get a partial refund from his Medicare insurance that he used to have. He shares that he’s still waiting for the rest of the money. He says that it has only been over six months, so he then contacted his legislative representatives to put in a congressional interest for him.  “Perhaps that will help to speed up the process,” he tells us.

It makes him more self-determined when he’s finally able to get some of the things that he has been waiting for. 

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

Jeremiah’s tip to become more self-determined is “if there is a will there is a way.” He explains that, in life, there will always be mountains and maybe the traditional way is to climb that hard terrain, but with some of our physical and or mental/emotional limitations, climbing might not be feasible under certain disabilities.  However, we have many other abilities and hidden talents where it is often overlooked by other people in society. Who said we can't climb to the top of the mountain by digging underneath it, going around it, or taking a helicopter to get to the top of it. In the United States, our primary mode of transportation is by car, but when there are rivers or other deterrents  the human race is known to improvise. 

He gives this example: for instance, to get from one side of the river to the other in a major city, they often provide water taxi where you can travel by boat.  When there is a problem that the majority of people have, society fixes it.  But if it's an issue for just a 'small' number of people, it becomes too bad and so sad. But what if both sides can coexist together?  There was a video that discussed how we use texting on cell phones and pizza cutters (along with other resources) where it was first created for people with disabilities.  If we focused on accommodating the minority of people, it could very well end up accommodating the majority of people in the long run. This would make many more people happy. When we design for disability, we all benefit | Elise Roy - YouTube

What are some of your hobbies?

Jeremiah has many hobbies. He likes to surf the internet (“though I don't seem to be catching any waves,” he jokes) and have conversations with friends on Facebook. He also enjoys listening to Youtube music. He shares that music keeps him calm or relaxed, and it helps to boost my level of happiness. When he is away from the computer, he enjoys watching a good tv show or movie. Mystery films or good comedies tend to be some of his favorites. He loves spending time and napping with my dogs. “A dog will always love you unconditionally and during this cold winter they are perfect bed warmers. They are my fur babies forever,” he says.  Another hobby that has recently picked is looking for 'money' during his free time. Perhaps it's a store parking lot or in a movie theater auditorium. “Those dimes and nickels add up.  I have often used this pocket change money to help fill up my car's gas tank or put towards other essential items like groceries,” he 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.

The National Alliance for Caregiving wants to get a pulse check on the mental well-being of family caregivers, and we want to hear from you.

They want to know:

• What joys have you experienced as a caregiver?
• How are you feeling about being a caregiver?
• What are challenges you have faced as a caregiver?
• What are concerns you have about providing care?

The message you leave will inform policy and practice efforts to improve support for family caregivers like you! All messages left will be anonymous, with only the transcript being used to help us advocate for change.

View flyer

The LTCAC serves as an advisory body to DHS on existing and emerging aging, disability, and long-term care systems issues. Members provide advice and make recommendations to the DHS Secretary regarding long-term care policy, programs, and services. Deadline to apply is February 3

Learn more about LTCAC.

Application for the LTCAC.

The IRIS Advisory Committee is currently looking for interested persons to apply to be on the committee.  DHS aims to appoint representatives that have experience with the populations and issues addressed by the IAC. The IAC strives to represent the full diversity of the state.  Applications due February 3rd.

View Application

$1.35 billon. That’s the amount of the recent Mega Millions jackpot. It has been all over the news because it has been awhile since anybody has won the jackpot.  It has brought up the question: what would you do with a billion dollars?  Obviously, everybody has a different answer to the question and there is no right or wrong answer.  Responses to this question widely vary.  While some people dream really big and have extravagant ideas, others are more conservative and think strategically.  It’s an interesting question for everyone to ponder.  For people with disabilities or those who rely on government programs, the thought of suddenly having that much money is almost daunting.

“It wouldn’t really be beneficial to me if I won the jackpot, “ I said to my parents a few years ago when one of the lottery games had an enormous jackpot.  My dad disagreed and said yes it would.  Since my parents and I always have the topic of my care on our minds, my dad explained that I could pay people decently to take care of me.  We could hire and pay people decent wages to stay with me around the clock (while I don’t need 24/7 care right now, I’m realizing more and more how nice it’d be to have someone around to help me with things all the time).  I agree, but I don’t think winning the lottery would solve all my care troubles.

What would I do with one billon dollars (ok, about 474 million after taxes)?  That’s a very good question.  It’s interesting to think about because while, yes, almost everything in my life would change, my needs wouldn’t.  I’d still need caregivers to assist me with all my daily needs, I’d still need accessible housing of some sort, I’d still need medical professionals and other specialists to help me with my medical and equipment needs...the list goes on and on.  Would I still be able to receive the services I need?  Obviously and rightfully so, I’d be off all government assistance, but how would that work logically?  Would I be kicked out of my income-based apartment right away? What would happen with all of my insurance things?  Having so many needs, would I even be able to get private insurance?  I’d be able to buy all the equipment, but would I still qualify for assistive technology support?

Now, I realize that even thinking about this is pretty silly—especially since I’ve never bought a lottery ticket—but, what is the first thing I’d do after winning the lottery?  After contacting my immediate family (and probably going out for a nice dinner to celebrate), calling and meeting with a lawyer and financial advisor, I’d begin notifying government entities to try to figure out how to move forward. Next, I’d have to figure out a place to live.  I don’t think there are too many accessible millionaire homes readily availability in this country, so I’d probably find a big condo in a big city and have it renovated.  Then, assuming I’d be off my long-term care support, I’d have to figure out how I was going to do my care.  Since I wouldn’t be limited by insurance, I’d probably seek out a nice home care (believe it or not, some do exist—it’s just that only accept certain insurance or private pay) to set up care.  I’d buy an accessible van and hire and insure drivers to drive me everywhere.  I’d have to figure out health insurance.  Due to having a significant pre-existing condition, finding insurance maybe challenging, but I’d be able to afford a hefty insurance plan.

What would I do?  Would I continue working?  Probably not—at least not for pay.  Would I continue to advocate?  I can’t imagine that I wouldn’t because it’s who I am.  After ensuring my family and I were set for life, I think I’d start donating my money.  No idea how this would be possible, but I think I’d figure out a way to donate money to direct care workers.

It’s impossible to fathom having that much money.  To most people, one billion isn’t really even a realistic number.  Suddenly having that much money would drastically change anybody’s life.  Persons with disabilities are no different; however, we might have some extra things to take into consideration. Being financially stable would definitely make life easier, but it likely wouldn’t solve all our problems. In some ways in may in fact create new ones.  While the odds of winning a big lottery jackpot are extraordinarily low, it’s fun to daydream about what life would be like as a billionaire! 

***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.

This new online tool helps policymakers, advocates, and other stakeholders understand how states support direct care workers, where they can improve, and how they compare to other states.

View  resource

The University of Wisconsin-Green Bay was awarded a grant for $865,010 from the Wisconsin Department of Health Services. Wisconsin DHS has awarded a total of $17.3 million to 69 organizations around the state to combat the caregiver crisis.  UW-Green Bay health educators will utilize the money to create a leadership training program “designed to give managers the skills they need to increase retention of employees… ensuring older adults and those with disabilities receive the vital care they need.”

Read more

The World Health Organization estimates that more than 15% of the approximately 8 billion people on the Earth experience disability; yet  only 4% of the 90% of companies that claim to prioritize diversity and inclusion considering disability in their initiatives, according to a report from the Return on Disability Group. There are several reasons for this.

Read more