News

Most people were never think of a stick of deodorant as being an obstacle, but for people with visual impairments or limb motor challenges, putting on deodorant is a difficult task. Recently, a deodorant company designed an inclusive deodorant container. It has a hooked top and a wider bottom so it can be gripped easier. 

Read more

The documentary "Crip Camp" is about the whole disability rights movement. It tells the stories of many of the laws that protect the rights for people with disabilities. It was nominated for a Oscar, but it didn't win. However, many people felt it was win for people with disabilities. The  nomination made people with disabilities more visible in the film industry. It also brought awareness of the things that still need to be changed. 

Read more

The Wisconsin Department of Health Services (DHS) is opening a 30-day public comment period for the draft of the 2021 Wisconsin Medicaid Managed Care Quality Strategy. DHS invites you to submit your feedback by May 21, 2021.

The Quality Strategy describes DHS’ strategies for assessment and quality improvement of managed care services offered to Medicaid members. The 2021 Quality Strategy is the second version of the original Quality Strategy published in 2018. The 2021 Quality Strategy includes improvements based on Medicaid quality team review, public comment from the 2018 Quality Strategy, and feedback from the Centers for Medicare & Medicaid Services.

The Quality Strategy sets a three-year vision for the Division of Medicaid Services to achieve its quality goals for managed care programs, and it is intended to evolve over time. The Quality Strategy includes the specific strategies Wisconsin will use to best meet the health care, service, and support needs of Wisconsin Medicaid members. The Quality Strategy includes BadgerCare Plus and Medicaid Supplemental Security Income health maintenance organizations, Health Homes, Family Care, Family Care Partnership, Children Come First, Wraparound Milwaukee, and Care4Kids managed care programs.

Public comment is an opportunity to submit your comments and feedback to DHS on the Quality Strategy. Find more information about the public comment period and review the 2021 Medicaid Managed Care Quality Strategy on the DHS website.

The Federal Communications Commission (FCC) recently released a public notice inviting comment on whether any updates are needed to the rules implementing the Twenty-First Century Communications and Video Accessibility Act (CVAA)

Most of these rules have been in effect for many years, and many of them have not been revisited recently, some since initial adoption. Given changes in technology and industry practices, as well as taking into account consumer experiences, the Commission seeks comment on whether there is a need to update these rules.

Interested parties may file comments by accessing the Electronic Comment Filing System at https://www.fcc.gov/ecfs/filings.  All filings must reference GN Docket No. 21-140.  People with disabilities who need assistance to file comments online may request assistance by email to FCC504@fcc.gov.

Comment Deadline: May 24, 2021

Reply Comment Deadline: Jun 21, 2021

For general information about the CVAA, visit  https://www.fcc.gov/general/twenty-first-century-communications-and-video-accessibility-act-0.  

For specific questions, please contact Debra Patkin, Disability Rights Office, Consumer and Governmental Affairs Bureau, at (202) 870-5226 (voice or videophone for American Sign Language users) or Debra.Patkin@fcc.gov, Diana Sokolow, Diana.Sokolow@fcc.gov, of the Media Bureau, Policy Division, (202) 418-2120, or Eli Johnson, Eli.Johnson@fcc.gov, of the Wireless Telecommunications Bureau, Competition and Infrastructure Policy Division, (202) 418-1395.

Self-Determination Network News:

April 2021

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

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:

• COVID-19 Vaccine Questions and Answers
• A Conversation with Micah Fialka-Feldman
• Updated COVID-19 Vaccine Information

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:

• Volunteer Research Participants Wanted: Allison is looking for volunteers to help her in a research study about social isolation for people with disabilities. She is in search of community development practitioners/connecters/consultants/organizers or similar roles with communities who have experience working with people with disabilities. Learn more and contact her today! 
• Executive Order Increases Voting Access: Recently, President Biden signed an executive order that will increase voting access. Find out what the order includes. 
• Doctors Bias: A recent study found that many doctors have a bias against people with disabilities. Read about what exactly the study revealed. 
• Vaccine Access: The Kaiser Family Foundation released a detailed report on COVID-19 and the disability community. Look at some of the interesting statistics and maps.
• Take a Survey: The Collaborative on Health Reform and Independent Living is doing a survey about health insurance, health care access, and the pandemic for people with disabilities. The survey is open until April 30th. 
• Home Modifications Grant Program: HUD’s Office of Lead Hazard Control and Healthy Homes has announced $30 million in grant funds and training resources to non-federal entities to establish the Older Adults Home Modification Grant Program. The grant program will assist experienced nonprofits, state and local governments, and public housing authorities in programs that make home modifications and limited repairs to meet the needs of low-income older adult homeowners. Applications due May 4th. 
• Stimulus Checks: Many people with have received stimulus checks. Read about how some people are putting their money in an ABLE account. 
• Waitlist Eliminated: At the end of February, Wisconsin achieved something highly anticipated for people with disabilities. Read about how the waitlist for long-term care services was eliminated for adults. 
• Stimulus Bill Sends Funds to the Disability Community: Recently, President Biden signed a big pandemic relief bill that will send billions of dollars to special education and home-and-community-based services.  Learn details about how this will help people. 
• Emergency Broadband Benefit Program: The Federal Communications Commission (FCC) has launched an Emergency Broadband Benefit Program to help households struggling to pay for internet service during the pandemic. Find out who is eligible. 
• Vaccine Rollout Confusion: Vaccine rollout in Wisconsin is going study, but there has been a lot of confusion about who is eligible when. Read about how people were getting mixed messages. 
• Self-Direction and COVID Study: Researchers at Brandeis University are conducting a study on the experiences of people with disabilities who self-direct Medicaid-funded HCBS during the pandemic.  Find out how to participate. 
• Feedback Wanted on Employment Policies and Programs: The U.S. Department of Labor is seeking input on ideas for ensuring equity in employment policies and programs for people with disabilities from historically underserved communities.  Comments due April 26th. 
• Feasibility of Internet Emergency Alerts: The Federal Communications Commission (FCC) recently proposed rules to improve the way the public receives emergency alerts on their mobile phones, televisions, and radios. They are seeking comments on these proposed rules. Comments are due June 14th. 
• Lifespan Respite Care Program Grant Opportunities: The Administration for Community Living has opened up two grant opportunities for the Lifespan Respite Care Programs. Find out more about these! 
• Bringing The Long-Term Care Reform Debate to the Forefront: President Biden has announced that he plans to expand Medicaid's Home-and-Community-Based Services for people who receive long-term care and supports. Read about how this has already achieved one major goal. 
• COVID-19 Guidance for Day Centers: The Centers for Disease Control and Prevention is offering up new guidance for day centers and the people with disabilities they’re serving during the ongoing COVID-19 pandemic. Learn what this suggests. 
• Accessible Airbnb Experiences: Airbnb is introducing a new slate of offerings specifically aimed at people with disabilities. Find out how they are catering to people with different abilities. 
• Respite Program Survey: Do you know of a respite program that uses students as respite providers? Help create a toolkit for other respite programs by taking this survey. It closes June 1st. 

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're shining the spotlight on Cynthia. Working to support people with disabilities for over four decades, she has seen many positive changes in the community. Stop by this month's Member Spotlight to get to know Cynthia. 

Who should we shine the spotlight on next?

Stacy’s Journal

Upcoming Events

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

• Webinar: Strengths-Based Planning For Worst-Case Scenarios: Person-Centered Planning In Disaster Preparedness: April 26th, 2p.m. to 3:30p.m., Online
• Webinar: The Federal Response To COVID-19 - Addressing The Needs Of The Autism And Disability Communities: April 28th, 1p.m. to 3p.m., Online
• Circles Of Life Virtual Conference 2021: May 6th-7th, Online
• Webinar: Play Areas: May 6th, 1:30p.m. to 3p.m., Online
• Virtual Employment First Conference: May 13th, 8:30a.m. to 3:30p.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.

Do you know of a respite program that uses students as respite providers? If so, please complete this brief survey (https://link.zixcentral.com/u/e96e4a27/UqF0gNKi6xGAfkv6hnsoMg?u=https%3A%2F%2Fbit.ly%2FStudentRespiteSurvey) no later than June 1, 2021.  Survey results will be used to help create a free downloadable toolkit to promote the development of respite programs that engage students as respite providers.

We would greatly appreciate if you could also share this invite within your networks, as appropriate.

This project is led by Dr. Kim Whitmore, Assistant Professor in the School of Nursing at the University of Wisconsin – Madison in partnership with the Respite Care Association of Wisconsin. Funding for this project is provided by the Lifespan Respite Grant Program from the Administration for Community Living (Grant No. 90LRLI0032-01-00).

Please contact Kim Whitmore at Kim.Whitmore@wisc.edu with any questions.

“Sticks and stones may break my bones, but words will never hurt me.” Many people hear that saying in life. Is it true? Absolutely not. Words hurt. In today’s world, I wonder what would happen if words caused physical harm. I think we would have even more problems than we already do. Unfortunately, discrimination is part of life in the world we live in. I believe everyone gets discriminated against at some point in life—it’s just a fact. Obviously, there are lots of different types of discrimination. People with disabilities often feel more discriminated against than the average person.

“I used to take care of them,” a lady recently said to my parents while we were sitting by the pool in Florida. I was taken back by her comment. Them? Am I really a them? I know the lady likely didn’t mean to say it in a negative way, but it came off as if I was a part of some cult or something. I’m not a “them” just because I have some limitations. My mom went into her “Mama Bear” mode right away and started explaining all I’ve accomplished. This is a frequent occurrence when people make inappropriate comments or ask awkward questions about me. My parents don’t put up with rude people. When the lady left, I asked my mom, “am I really a them?” She and dad then went into their spiel about ignorant people. We’ve had this discussion a million times, but it doesn’t get old—it helps me realize that many people just don’t understand disabilities. In a way, talking about it with my friends and family (who obviously understand) helps me cope with the negativity.

I’ve written entries in the past about how people treat people with disabilities. People can be extremely rude. I’d like to think that they don’t realize they’re being hurtful when they say things, but sometimes, it’s hard to believe that. Thankfully, I was too young to remember this, but, when I was a kid and still in a stroller, a lady came up to my mom in a department store and asked her why she didn’t just let me die. Seriously? Who says that? I don’t even know how my mom responded, but I bet she said something to the effect that “I’m sorry you feel that way and I’m sorry Stacy heard you ask me that. We are extremely grateful that we have her.” My mom still brings it up every once in a while, so I know it hurt her.

As I get older, I find myself wondering if it will ever stop. Will my nephew have to respond to those inappropriate comments about me? How will he react? I know my sister, brother-in-law, parents, and I will try to help him understand that people will stare, point, and say things because I’m different. My hope is that he will understand and became another one of the people who help me advocate and respond.

As I’ve said before, kids are totally different. When they point, stare, and say things, they do it out of curiosity. They are trying to learn about differences. When I see a little kid pointing and asking questions or saying something, the adult with them often pulls her/him away and tries to hush the child. I don’t like this. Depending who I’m with at the time, I often try to interact with the kid. It’s so important to educate kids and let them ask the questions, so as they get older, they know how to interact with people who are different than them.

I believe people with disabilities also have to make a conscious effort to educate people. We can’t expect people not to react negatively if they don’t know how to appropriately interact with us. Of course, in a perfect world, people should not interact with people with disabilities any differently, but we know that this world is far from perfect. As a person with a disability, I feel I have a responsibility to educate people who don’t understand or know how to treat people with disabilities.

In today’s day in age, disability discrimination has been put on the back burner. With everything going on in the world, I believe there are many other pressing issues to tackle at the moment. That’s not to say that disability discrimination/equality isn’t important. It’s just the media has many more pressing issues to cover. I’ve only discussed verbal discrimination in this entry, but there are many other types of discrimination that people with disabilities face. Housing, financial, and employment discrimination are also very prevalent in the disability community.

Will there ever be a day when the pronoun “them” will be just associated with a group of friends and that’s the only meaning? Unfortunately, I don’t see that day coming anytime soon. It’d be a very boring world if everyone was exact same. We have to continue to make an effort to be vigilant and sensitive to differences. I challenge each of you to reach out to someone who is different than you this week. Take five minutes to talk to him/her and learn something about them. You never know—it could result in a lifetime friendship!

***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.

Meet Cynthia. Working to support people with disabilities for over four decades, she has seen many positive changes in the community. She encourages people to make use of the Aging and Disability Resource Centers (ADRCs). We’re so fortune to have her as a member of the Self-Determination Network!

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

Cynthia is an Information and Assistance/ADRC Specialist for the Aging and Disability Resource Center of Sheboygan County with a focus on serving adults with intellectual and development disabilities. She has been supporting people with disabilities for over 40 years. She explains that she remembers the days before the repatriation of individuals from ICFs-MR (now called ICFs-IDD) back to their home communities and nearer to family with work opportunities being mostly restricted to “Sheltered Workshops”. She worked at a camp during a summer during college that catered to people with I/DD and after college worked at two different privately owned ICFs-IDD in Milwaukee, a pre-vocational program then known as a Sheltered Workshop in a Milwaukee suburb, then a Case Manger for Sheboygan County Health and Human Services Developmental Disabilities Services (which included two years contracted to an MCO) and finally the ADRC of Sheboygan County for the past almost 12 years. “If someone asked me when I was 20 what my career would be, I NEVER would have thought, let alone answered, “to be a Social Worker focusing on people with I/DD”, she shares. She changed my major after the summer working at the camp.  

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

Cynthia joined the Self-Determination Network for a few reasons.  She doesn’t work in a major metropolitan area, so our resources are not as extensive as in other areas.  She explains that it can also be very insular since many employees from the different local agencies have been collaborating for at least two decades.  It is helpful to find out what other communities are doing that is positive or innovative and that maybe we can incorporate on a local level. Her work currently focuses on emerging youth with disabilities and assisting in the transition to adulthood. She shares that it is wonderful to see the generational differences. They have gone from trying to convince people that it is ok to make their own decisions and work towards their own goals to younger folks knowing that it is their right to do so. She also manages their agency’s social media, so she’s always looking for resources to share with others, even if they have to drive to access it.

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

Cynthia has seen many changes in the past 40 years from the attitude and actions of service providers and family caregivers, language and terminology, types of service provided, Long Term Care Funding and an almost total disregard of self-determination to the embracing of self-direction.  It’s not universal, there is still learned dependence amongst some people with I/DD and a tendency for some family caregivers to lean towards trying to block all risk for their loved one which is an obstacle to self-determination. 

She explains that she had to evolve as well and she clearly recalls participating in meetings in Milwaukee County where the county staff and residential providers made decisions about who had empty beds, who needed to move to make room for someone else and basically moving people around to make the system work rather than addressing individual preferences. She realized that the people she worked with in the ICF-MR and had referred for residential services had little to no chance to achieve their dream of moving out to a something more independent.

At the request of her then employer, she had also spent a few weeks with a journalist from a national magazine who was doing a series of articles about people in Wisconsin who lived with disabilities and how their wishes/needs/wants were or were not being met.  She introduced him to people with I/DD who wanted to tell their stories and helped him make connections in the community with involved agencies.  In reading his series, it was eye-opening for me to read things from the perspective of the interviewees. There were things that she thought were positive or showed progress that from the perspective of the person were not. 

“These were some of the events that helped me evolve as well as being able to observe the positive changes in lives of people who had been able to express their wants and needs and, in some cases, self-direct their funding,” she says. When she was a case manager, she really enjoyed helping people (and their families) realize and embrace their lives outside of large institutions when ICFs-IDD across the state were closed. “People moved from fear of the unknown and fear of risk to more fully embracing what the world had to offer,” she explains. 

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

Cynthia encourages everyone to use the network of Aging and Disability Resource Centers across the state. She explains that they are underutilized and ADRCs have or can find information about all kinds of resources. ABLE accounts and Special Needs Trusts are also underutilized.  She also firmly believes that when working with Long-Term Care funding, it is important to work with staff who have a knowledge base and experience in working with people with I/DD; although some skills are universal, it is a specialty and people should request a case manager or ICA who has this kind of experience.

She would also like to mention the movie, “Crip Camp.”  It’s a great documentary that really shows how a group of people living with disabilities started the self-determination movement in the 1970’s.

What are some of your hobbies?

Right now, Cynthia’s main hobby during the pandemic is contemplating and planning for her life after retirement. She really enjoys being by water.  “If you live in a part of the state that is not on a Great Lake, you really need to visit one because it is unlike anything else………except maybe the ocean,” she tells us.

***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.

Airbnb is introducing a new slate of offerings specifically aimed at people with disabilities. Though designed to accommodate people with autism, dyslexia, attention deficit disorders and others who identify as neurodiverse, anyone can participate in the online experiences.

Read more

People with disabilities have faced multiple challenges during the pandemic with things such as education, employment, and physical and mental health. Though little research has been done, it is widely known that this population is at significantly higher risk of hospitalization and death due to COVID -19; yet, many states haven't made prioritized this population for the vaccine. To help with this public health issue, the National Association of Councils on Development Disabilities has created a website to help people with disabilities find trusted resources on the vaccine in their area. 

Read more