News
Join us on Thursday, May 16 2019 and mark the eighth Global Accessibility Awareness Day (GAAD). The purpose of GAAD is to get everyone talking, thinking and learning about digital (web, software, mobile, etc.) access/inclusion and people with different disabilities
There's no doubt that technology has become much more accessible to people with disabilities. However, many people feel there's lots of room to improve things.Making it easier for developers to identify and correct errors in code that prevent platforms from being accessible is just one example. The good news is that companies are learning to cater to people with disabilities.
A growing collection of stock images that break stereotypes and authentically portray people with disabilities in everyday life are being compiled for use by the public. The efforts are being led by a partnership between leaders in the stock images and disability rights fields. There are over 350 images in the Disability Collection's inaugural batch of images. The images show people with disabilities participating in everyday life activities. The team took an unique approach to compiling the images. They performed focus groups and collected feedback from various disability organizations.
May 2019
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Call for Exhibitors
The Wisconsin Self-Determination Conference empowers people with disabilities to have more control over their lives. Each year, people with disabilities, their families and people who support them participate in the conference to learn more about self-determination and self-directed supports so they can live more independently, actively participate in their communities, and use public funds efficiently.
The Wisconsin Board for People with Developmental Disabilities is currently accepting applications to be an Exhibitor/Micro-enterprise vendor at the Self-Determination Conference. Tables will be available on Tuesday October 15th and Wednesday October 16th. Space is limited and only applications from exhibitors that directly support self-determination and self-direction in WI will be accepted. Apply to be an exhibitor today!
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 May, we shine the spotlight on Marilee. This advocate extraordinaire doesn’t let limitations get in the way of leading a very successful life. In addition to owning her own graphic design business, she’s very involved in ADAPT. She encourages people to get involved in disability advocacy and to never give up. Stop by this month's Member Spotlight to get to know Marilee.
"Imagine relying on assistance of another person to accomplish every single task you need to survive on Earth. For people with disabilities (born with or acquired) or health conditions, relying on other people to assist you with all of your basic needs can often seem overwhelming."
In this month's entry, Stacy discusses how having to rely on others can be very challenging at times. 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:
- Program Extension: Legislation that the President recently signed ensures that a program that moves people with disabilities from institutions to the community can stick around while advocates push for a longer-term solution. Lean about how the program is helping move people into the community.
- Effort to Expand Respite Care: Caring for loved ones with special needs is often very rewarding, but it can also take a physical, emotional and financial toll on families. Read about a bipartisan bill that would boost respite care services across the country.
- New TV Show: A new television series chronicling the experiences of people with autism and other special needs as they search for meaningful employment is set to debut. Find out more about the show.
- Research Funding Opportunity on Family Support: The purpose of this opportunity is to conduct research, training, technical assistance, and related activities to contribute to effective support of family caregivers of people with disabilities, and ultimately to improved community living, health and function, and employment outcomes of people with disabilities who are supported by family members. This opportunity closes on June 10th.
- Neighborhood for Those with Special Needs: In recent years, more and more housing options for people with disabilities have appeared. Read about how, in Phoenix Arizona, a whole neighborhood is being developed for people with special needs.
- Advocacy Training Opportunities: PIP and YiPPE are training programs for parents and youth with disabilities to learn about the transition process in the areas of employment, education, living and health. Find out more about these great programs.
- Worries about Medicaid Changes: Advocates worry that Medicaid funding for people with disabilities could be jeopardized if some states succeed in overhauling how they receive federal dollars. Learn why advocates are worried.
- Governor Evers' First Signed Bill: Recently, Governor Evers signed his first bill into law. Find out why this bill was so significant to the disability community.
- Managed Care Providers Investigation: With many states turning to private insurers to handle Medicaid services, an investigation is underway to investigate whether these insurers are offering people with disabilities the care they're entitled to. Read about why it's being questioned.
- National Family Support Program: A research brief serves as an introduction to the National Family Caregiver Support Program and related programs administered by Administration for Community Living (ACL) that provide support to caregivers of older adults, as well as caregivers of persons with disabilities. Learn about this new program.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Long Term Care Advocacy Team: May 14th, 2:30p.m. to 3:30p.m., IndependenceFirst, Milwaukee WI
- 'Intelligent Lives' Free Film Screening!: May 22nd, 6:30p.m. to 9:30p.m., Stoughton Opera House, Stoughton WI
- Transportation Consumer Advocacy Team (TCAT): May 28th, 1p.m. to 3p.m., IndependenceFirst, Milwaukee WI
- Webinar: Accessible Public Rights-Of-Way Open Q&A Session: June 6th, 1:30p.m. to 3p.m., Online
- SpecialCare Presentation: June 11th, 11:30a.m. to 1p.m, Thunder Bay Grille, Pewaukee WI
- Long Term Care Advocacy Team: June 11th, 2:30p.m. to 3:30p.m., IndependenceFirst, Milwaukee WI
- Paratransit Pizza Ranch Outing: June 17th, 10:45a.m. to 2p.m., Pizza Ranch, Waukesha WI
- Transportation Consumer Advocacy Team (TCAT): June 25th, 1p.m. to 3p.m., IndependenceFirst, Milwaukee WI
- Lynzay Legois Adaptive Water Skiing: June 28th, 12p.m. to 5:30p.m., Fischer County Park, Burlington WI
- Long Term Care Advocacy Team: July 9th, 2:30p.m. to 3:30p.m., IndependenceFirst, Milwaukee WI
- ADA Day: July 12th, 10:30a.m. to 12p.m., Capitol Library, Milwaukee WI
- Transportation Consumer Advocacy Team (TCAT): July 30th, 1p.m. to 3p.m., IndependenceFirst, Milwaukee 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.
The Wisconsin Self-Determination Conference empowers people with disabilities to have more control over their lives. Each year, people with disabilities, their families and people who support them participate in the conference to learn more about self-determination and self-directed supports so they can live more independently, actively participate in their communities, and use public funds efficiently.
The Wisconsin Board for People with Developmental Disabilities is currently accepting applications to be an Exhibitor/Micro-enterprise vendor at the Self-Determination Conference. Tables will be available on Tuesday October 15th and Wednesday October 16th. Space is limited and only applications from exhibitors that directly support self-determination and self-direction in WI will be accepted.
ADMINISTRATION FOR COMMUNITY LIVING: New Research Brief: ACL Supports for Family Caregivers Across the Lifespan
By SD Network, 2019-05-06
A research brief serves as an introduction to the National Family Caregiver Support Program and related programs administered by Administration for Community Living (ACL) that provide support to caregivers of older adults, as well as caregivers of persons with disabilities. In 2016, the National Family Caregiver Support Program provided support services to more than 212,000 individual caregivers. This included 61,989 caregivers who received respite services, as well as 120,100 individuals who received counseling. ACL also reached more than 20 million caregivers with their informational services.
DISABILITY SCOOP: Are Managed Care Providers Wrongly Denying Services To People With Disabilities?
By SD Network, 2019-05-06
Many states are turning to private insurers to handle Medicaid services including those for people with disabilities which means states pay insurers a set amount of money to administer benefits. An investigation is underway to investigate whether these insurers are offering people with disabilities the care they're entitled to. The report detailing the findings is expected sometime next year.
Imagine relying on assistance of another person to accomplish every single task you need to survive on Earth. Usually, kids are pretty physically self-sufficient when they reach the age of four or five. If all goes right, those physical capabilities last a lifetime. Often, as people reach their senior years, they sometimes need more assistance again, but generally most people have at least 50 or 60 years where they’re physically able to take care of themselves. For people with disabilities (born with or acquired) or health conditions, relying on other people to assist you with all of your basic needs can often seem overwhelming.
As I’ve explained in previous entries, cerebral palsy affects every part of my body. I need complete assistance with all of my basic needs like toileting, bathing, and dressing. My disability was caused from complications during birth, so I’ve never known life any different—I’ve always needed quite a bit of help. As a child, I guess I didn’t really realize how much assistance I required because it was never made into an issue. My parents did all of my cares and we were a “normal” family. I never went to any special camps or respite programs. Family members took care of my sister and I occasionally while my parents went out to dinner or very occasionally on weekend get-a-ways. Just like many other families do, we also had high school babysitters take care of us occasionally. Though I didn’t realize it at the time because I was a kid, my parents had to do some extra training with them to ensue my needs would be met. Those high school kids had to be pretty incredible people to agree to watch a kid with significant needs—I remember I loved the babysitters we had.
When I first started school at the age of three, I was in Early Childhood programs, so there were lots of instructional assistants that helped all the students in the class. When I entered Kindergarten, I was in a regular education classroom, so a one-on-one assistant was assigned to me to help me. This person helped me with whatever I needed to succeed in school (getting books and equipment set up, taking notes, getting from one place to another, feeding, toileting—the list is endless). I had some incredible assistants through the years. I was amazingly blessed to have the same assistant with me second through twelfth grade. That’s pretty unheard-of in today’s world. We were very lucky that the district allowed us to stay together all the way through; we developed a very special relationship! We are still close today.
Starting in junior high, a home health came in just for an hour or so after school just to get me off the bus, take me to the restroom, and give me a snack. Like I discussed in a previous entry, this was the first time I had actual care aides taking care of me. Though they didn’t really do many personal cares with me, I still had to develop a relationship with them. Many of them were middle-aged woman, so they were like more babysitters to me, and I don’t mean that negatively. Since they were older, though, looking back, that’s probably why I had very few problems with them. They knew what needed to be done and understand the responsibility. I still keep in touch some of them.
College was a whole different experience. I obviously needed assistance with all my basic needs. As I’ve talked about many times, the care agency I had in Whitewater hired a lot of students which was really cool. Probably because I was young and a student as well I had very few problems with aides. They knew what I needed and that I relied on them. It rarely happened, but when there was a problem between a worker and I, the agency would often just take the person off of my schedule. This was mainly possible because my friends would often pick up the shifts. I admit I was probably a little spoiled down there!
When I moved to Oshkosh, the two agencies I had had a mixture of people working for them. I then began to realize what I would be facing for the rest of my life. It takes a special type of person to be a caregiver. Some people have it and some don’t. When I had problems with a person, the agencies would try to work the problem between us out. Sometimes the intervention worked, but often it just made things worse.
Over the years, I’ve gotten much better at working with people. Now that I’m hiring my own staff, I’ve realized that “good ones” are few and far between. I’m not going to be friends with every person I hire and that’s ok. I’ve learned that some people need to be told what to do and how to do it over and over. Work ethnic widely varies, and professionalism is often lacking. I have to have a lot of patience working with my staff as there’s a variety of personalities and attitudes. It’s definitely a challenge.
Having to rely on others for assistance creates a unique lifestyle. You have to be very patient; yet you have to be so organized. I’ve realized that as frustrating as it is, this is something I’m going to have to deal with the rest of my life. Admitting, sometimes I lose my cool on people who are trying to help, but I think everybody has moments of frustration—it’s part of 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.
WISCONSIN DEPARTMENT OF HEALTH SERVICES: County Fact Sheets: DHS 2019-2021 Budget Proposal
By SD Network, 2019-05-01
Wisconsin Department of Health Services has a new web page where you can see how DHS's proposed budget with Medicaid expansion would affect your county. You can click on your county to get a breakdown of how much additional funding would be brought into local communities under the Governor's budget proposal estimated at allowing Wisconsin to draw down a total of $1.6 billion in new federal funding. People can see how much is projected to go towards expanding access to dental care and mental health services, increased wages for direct care workers and more.
Recently, Governor Evers signed his first bill into law. With many people with disabilities in attendance, he signed a bill that removes the term "mental retardation" from state agency rules and regulations. The new law immediately replaces the term with "intellectual disability" in all administrative code.