News

Want to learn about what’s in the Wisconsin State Budget?  Concerned about whether supports people with disabilities need will continue to be funded? Attend a State Budget Training in your area.

The Wisconsin Board for People with Developmental Disabilities, The Arc Wisconsin and Disability Rights Wisconsin are partnering to bring budget trainings to as many communities as possible during the months of March and April.

Find out where and when these trainings are!

Lawmakers are making efforts to renew a federal program that helps people with disabilities move from institutions to community-based settings.  Legislation introduced late last month known as the EMPOWER Care Act would reauthorize Money Follows the Person for five years--a Medicaid program gives states extra dollars to provide employment, housing and other services needed to assist people transitioning from nursing homes and institutions to apartments or group homes.

Read more

New legislation, known as the ABLE Adjustment Act, would make ABLE accounts accessible to thousands of more people.  Currently, individuals with disabilities that onset by age 26 qualify.  This new Act would move the age to 46.  ABLE accounts allow people with disabilities to save up to $100,00 without risking eligibility for Social Security and other government benefits. 

Read more

Meet Ginger Beuk.  Beginning at a very early age, this self-advocate learned the value of self-determination and advocacy.  When she’s not busy attending meetings for People First where she fiercely advocates for people with disabilities, she loves watching Wisconsin sports.  We are so fortunate to have her as a member of the Self-Determination Network! 

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

Ginger was born with cerebral palsy. Her parents started advocating for her at a young age. She explains that as she grew up, she learned why it was important to advocate for things that would make her life easier and better. She is a very independent woman who lives in her own apartment with staff that comes in a couple days a week to help her with things that are hard for her to do.

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

Ginger joined the Self-Determination Network so she could use it as a resource for her local People First group.  She also as a tool in her own life.

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

Ginger explains that there are a couple things in Wisconsin that are great news to anyone with a physical challenge or intellectual challenge. The first thing is that last year Governor Walker signed a bill to make Supported Decision Making as an option to Guardianship. The second is that Governor Evers has signed Executive order #11 to create a task force to help caregivers in Wisconsin.

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

As Vice President of People First Wisconsin, Ginger knows everyone has the chance to start living a self-determined life. “Even if it is as simple as picking out the clothes that they want to wear that day,” she explains.

What are some of your hobbies?

Ginger is an avid sports fan.  She loves watching Wisconsin sports teams—especially the Milwaukee Brewers, Green Bay Packers and the University of Wisconsin football. She also enjoys doing a lot of jigsaw puzzles and loves coloring in adult coloring books.

***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.

Apple recently announced that later this year 59 new emojis that represent people with disabilities will be released. People love using emojis to express emotion, talk to others, and shorten messages by sending emojis instead of words.

Soon people will be able to send a message with a service dog, a person using sign language, or even someone with prosthetic limbs.  There are also  such things as a hearing aid ear, a person using a wheelchair, or a person using a white cane will. There are even distinct guide dogs and service dogs.

Read more

Have you ever been somewhere when you suddenly pause for a moment and think to yourself, “How did I get here?” Whether it’s laying in a hospital bed, walking on stage for a graduation, lining up for a play on the field of a packed football stadium, sitting in a courtroom awaiting the jury’s verdict, or in another situation, most people have experienced a moment where they have stepped back and thought about how they ended up in that situation.  Many times, those moments can feel like an epiphany to people.  Obviously, depending on the circumstances, it can be a positive or negative revolution.

I had one of those moments a few weeks ago while attending Independent Living Days in Madison.  As I mentioned in a previous entry, last year I was appointed to the Independent Living Council of Wisconsin.  The Council works together with the eight Independent Living Centers in Wisconsin to provide services and advocacy for people of all ages with all types of disabilities. The Council meets quarterly rotating visiting the Centers.  Due to transportation and care issues, I attended a couple last year via teleconference.  Fortunately, thanks to my parents, I’ve been able to attend the last three in-person.  The February meeting is usually held at the center in Madison because Independent Living Days are right after it.  After discussing it with my parents, my mom agreed to come along as my caretaker.  Being my first time attending, I wasn’t really sure exactly what Independent Living Days were.  After some emailing, I learned that it’s a two-day event- the first day is like a conference about Independent Living and the second day is meeting with legislators at the Capitol.  There was a teleconference beforehand about what messages and asks to bring to the legislators.  After the teleconference, I programmed all sorts of different things to say into my communication app.

Being a council member, I was in Madison for four nights.  Monday was our council meeting, Tuesday was an off day (the directors of the Centers had their meeting), and Wednesday and Thursday were Independent Living Days.  My sister and brother-in-law live in the Madison area, so I’ve been down there a few times, but this time my mom and I really got to explore the area which was fun. Tuesday, we walked around State Street and the Terrace which was neat.  We also were able to meet relatives for dinner a couple of the nights so that was nice.

Wednesday and Thursday were amazing.  The hotel where the conference was at Wednesday was full, so, since parking is such a mess is that area, mom and I walked from our hotel which was about a mile away.  Of course, it’s Wisconsin, so it was snowing that day which made the walk interesting.   They started the conference off by giving a brief history of Independent Living in Wisconsin.  Being relatively new to this, I found it very interesting.  The break-out sessions were more geared toward Independent Living Center staff, but it was great learning more about the services the Centers provide.  For me, it was absolutely awesome getting to network with so many people—especially people from my area.  In the evening, they had a dinner, an award ceremony, and karaoke, so it was fun to be able to socialize.

Thursday morning, we met at the Capitol bright and early.  I had only been in the Capitol one other time—the day before my sister’s wedding and we were only there for a few minutes.  I had never actually seen offices or rooms.  It was neat to see.  Each center setup visits with legislators from their area of the state.  People went in groups to each visit.  There was at least one employee from the Independent Living Center in every group and that person took the lead in back the conversation.  There were four main topics we were supposed to discuss: Healthcare, Mental Health, Transportation, and Independent Living funding.  Each category had several asks (mainly for more funding), but, as I learned, it was more important to explain to the legislators about what people with disabilities are struggling with and how more funding or supporting a certain bill or issue would help.  I was able to meet with five legislators (or a person from their staff) that morning.  During the visits, I often chimed in on the topic of healthcare sharing personal stories about the direct careworker shortage.  I feel like personal stories make most of an impact on people.  Unfortunately, the visits were only about 15 minutes each, so there wasn’t much time for each topic.  Each legislator was given a folder with information about the Independent Living Center and the topics we discussed.

After we were finished with our visits, we all met back in a huge courtroom to have lunch.  As I was conversing with some of my new friends, I had *that* moment.  How did I end up in the Capitol advocating for issues I wholeheartedly believe in?  How did I become such an advocate?  Twenty-five years ago, who would have ever thought that I’d be using my cell phone to not only converse with friends, but to speak with legislators about crucial issues people with disabilities face?   I couldn’t help but reflect on where life’s path has taken me.  Sure, there have been many curves, but, often, those curves lead me on new paths.

I can only hope we made an impact during our legislative visits that day.  For me, saying it was an eye-opening experience would be a huge understatement.  Being able to advocate on that level was truly amazing.  In recent years, I’ve become more involved in disability advocacy.  I only hope I can continue to do so—I believe it’s my purpose in life! 

***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.

The Centers for Medicare and Medicaid Services (CMS) is working with the Administration for Community Living through the National Quality Forum (NQF) to address quality measurement in person-centered planning. NQF is seeking individuals with experience in person-centered care to serve on a multi-stakeholder panel. The nomination period is open until March 29, 2019, at 6 PM.

Over an 18-month period, NQF will use a multi-stakeholder approach to address person-centered planning and practice (PCP) as part of long-term services and supports (LTSS) systems. Beginning with the establishment of definitions, core competencies, and necessary systems characteristics, this work will establish a foundation for performance measurement of person-centered planning, catalyzing the development of a robust quality measure set that interfaces with other healthcare quality measures across provider types, settings, payers, delivery systems, programs, conditions, and populations. Both practical as well as forward-looking considerations, recommendations, and guidance will be provided to enhance the success of person-centered planning and coordination at the state level.

Information about the project and the nomination project is on the NQF website

For people with disabilities, finding dental care is often a struggle.  Nearly one-third  of adults with disabilities in Wisconsin had a tooth removed in the last year and one in four had not been to a dentist in at least 12 months.  The American Dental Association recently revised its code of conduct to prohibit denial of care to patients with physical, developmental or intellectual disabilities.  If a dentist is not equipped to handle or accommodate an individual, the code requires them to refer the patient to an appropriate provider.

Read more

A new Capacity-Building Toolkit for Including Aging and Disability Networks in Emergency Planning is now available called the Capacity-Building Toolkit.

This resource guides aging and disability networks to increase their ability to plan for and respond to public health emergencies and disasters. This toolkit helps programs that support older adults and people with disabilities, through the emergency planning process of preparedness, response, recovery, and mitigation activities.

The toolkit was written by the National Association of County & City Health Officials and the Association of State and Territorial Health Officials, in partnership with the Office of the Assistant Secretary for Preparedness and Response and the Administration for Community Living.

It can help organizations of all types conduct more inclusive emergency planning by facilitating personal preparedness for aging adults and people with disabilities. It can also help expand organizational knowledge of the unique challenges these populations face during emergencies. The toolkit can assist emergency managers and public health officials in understanding the capabilities and expertise of community-based organizations within the aging and disability networks.

Organizations that are new to emergency planning can use this  toolkit as an orientation to emergency planning. Those with established emergency preparedness programs can use it as a resource to enhance their capabilities..

Last week, Governor Evers announced plans to establish a statewide Task Force on Caregiving.  The Task force acknowledges the crisis and outlines steps to find solutions.  A survey last year reported that 97% of Wisconsin families had trouble finding direct care workers.   Many are hopeful this will help.

Read more