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When was the last time you thought about how much time it takes you to do a simple task? Like putting a Cheeto in your mouth? Or putting your clothes on for the day? Most people don’t even think about how long it takes them complete routine simple tasks. Simple tasks that humans do every day become second nature. It’s often only thought about when these routine tasks take longer to complete for whatever reason. When something takes longer to do than normal, frustration often sets in. For some people with disabilities, basic tasks often take longer to complete. It can vary day to day which creates more frustration. As I’ve said before, learning patience is a must when living with certain disabilities or health conditions.

Cerebral Palsy is considered non-degenerative which means that the actual condition does not get worse over time. As I’ve explained in previous entries, though, many people have found that secondary effects of the condition often appear as people age. Many of my friends with CP have found this to be true. The most frustrating thing is that none of us were expecting these issues. As kids, our parents weren’t told to expect more problems as we age.

I recently had another emergency gastrointestinal surgery. I’m fortunate to be able to know what’s happening and that I need to go to the emergency room. This was the fourth time it has happened in less than nine years. I spent a week in the hospital recovering and then another week or so at my parents. Fortunately, my parents were able to stay with me at the hospital to help with communication and cares. By now, we know the recovery routine pretty well.

However, this time has been a little different. My body hasn’t bounced back like it has in the past. While thankfully, the actual stomach issue has been resolved, my body is sort of playing games with me. My muscle spasticity has been way worse since the surgery. When my spasticity is really bad, my body freezes. I literally can’t move until the spasm passes, and this happens several times a day. We have no idea why suddenly it has increased. When it happens, it’s not only painful, but it’s also very frustrating. I have no idea when it’s going to happen. It has happened several times during meetings on Zoom. I just have to turn off my camera and do the best I can to continue to participate in the meeting. Thankfully, people who I work with are understanding and patient with me, but it’s incredibly frustrating.  

Due to this new issue, things also take me even longer to complete than before. I feed myself lunch everyday and I’ve noticed that it takes me much longer to eat than it once did. Same with typing--it’s taking me longer to accomplish things on the computer. My caregivers have noticed it too when they’re helping me with cares. When my muscles tense up, we have to stop what we’re doing and just wait. Fortunately, they’re all pretty patient and are good at taking the time I need.

I learned I need to have patience at an early age, but, admittedly, this has taken a toll on me mentally. Why is this happening to me? Will I ever catch a break? Is this my new normal? Questions such as these go through my head quite often lately. My poor mom gets the brunt of my frustration. We are working with doctors to try to figure out something that will help, but the truth is, there really isn’t a “cure all” for this. Unfortunately, it’s part of my condition and there are still many unknowns. At my post-op appointment, we questioned my surgeon about what could be done to prevent gastrointestinal issues from happening again. She told us that there is really nothing that can be done to prevent it. It’s just how my body is. She said that I have a “weird anatomy”,” and that there’s no way of knowing if/when it’ll happen again. Hearing that was discouraging. I told my mom, “I’ll probably end up dying from one of these gastrointestinal issues.” She didn’t know how to respond to that. She reminded me that it’s good that I’m able to tell when something is wrong and communicate that I need to go in. My surgeon emphasized that as well. Still, it’s a hard pill to swallow when your body is slowly declining at the age of 35, and there’s nothing you can do about it.

Let me be clear-- by no means am I looking for pity. I only share this to educate people. Obviously, I don’t hope anyone else is going through similar circumstances, but the reality is that people are. I want them to know that they’re not alone. May is Mental Health Awareness Month. It’s no secret that I’ve been in several “funks” from time to time. There are several different ways to deal with depression and anxiety. Some people see a therapist on a regular basis. Others take medication. Other people need in-patient treatment. There are several different options to help people deal with this. Personally, I use a combination of things. My mom is my sounding board. She is able to usually talk with me and get my mind in a better place. Sometimes, I talk with friends who I know have dealt with similar issues. Getting out and doing something social usually helps me a lot. I’m disclosing this in hopes of ending the stigma—several months ago, I talked to my doctor and started on a medication to kind of help me with anxiety and depression. I’m not proud to tell people that, but it’s life. I think it’s important to know that others need a little help. I finally got the courage to talk to my doctor after I talked with two of my friends who have similar issues. For me, the medication certainly doesn’t mask any of the thoughts or feelings I have, but I didn’t want it to. It does, however, seem to keep my mind a little bit calmer.

Mental Health is part of our overall well-being. Sometimes, life can be hard and unfair. We all have feelings of sadness and frustration sometimes. What’s important is how we deal with it. For me, when I’m having a rough time, my mom says, “remember, you’re doing the best you can.”  She’s right. I really encourage people who are having a hard time in any way to reach out to someone who can be trusted. It could be a neighbor, a friend, a coworker, a doctor… whoever that may be, share your feelings with them. It’s ok to ask for help.

***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 Felicia. This self-advocate has been proving doctors wrong since she was born. She has been involved in multiple disability advocacy boards and recently accepted a position as an Outreach Self-Advocate for an organization. She believes we can all make a difference in our communities and that it’s important to be a positive influence for others. We are so fortune to have her as a member of the Self-Determination Network.  

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

When Felicia was born, the doctor told her mom that she wouldn’t walk, talk, see, or hear, through therapy and hard work, she can walk, talk, see a little bit, and hear.  She shares that she was diagnosed at an early age with Autism. She was bullied throughout my schooling until she got into senior high school which led to having suicidal thoughts. However, she’s pleased to share that she battled through and graduated high school with a very high GPA. She no longer has suicidal thoughts either. After high school, she attended Milwaukee Area Technical College for awhile, but she had problems with Financial Aid. She then pursued a degree in Medical Coding and Billing from Milwaukee Career College. She finished the course, but due to financial issues, she never got her certificate.

From 2011 to 2014, Felicia was on a board called Transit Plus Advisory Council which is a council/board that advocated for people who were riding the paratransit program in Milwaukee called Transit Plus. She was the Chair for the Public Relations Committee of that board. In 2014, she helped out a friend get his online college and fellowship off the ground. She explained that she started out as a leader in the women's group and then she switched over to the foreign missions. She was made the CEO over North America and South America. In 2018, her friend passed away and that bumped her up to being the President and Chancellor of the online school and fellowship. She explained that the online school is a Christian oriented driven for people pursuing their calling.

In June 2013, Felicia started going to Wisconsin Lions Camp where she enjoys activities and help encourage other campers to go. In 2014, she went with a travel group out of Dane County as a travel chaperone.  She shares that she received a call from the founder of the group telling me that I could not come on anymore tours because she was disabled. So, from July 2014 to March 2017, she did research and started organizing her own travel group. In November 2016, she worked as an Intake Clerk for a friend’s her personal care agency until June 2017. In April 2017, I started founded Abilities Travel Club. Abilities which is a travel tour business that helps the community, travel lovers, people with disabilities, and seniors enhance Independent living skills while traveling. In 2019, she was a part of a board called Dreamability where we would help people with disabilities fulfill their dreams and goals; however, this group was disbanded due to the lack of participation and other issues.  In 2019, she was voted as the president of Across The Way - Christian Resource Center (ATW - CRC) which is a Christian Resource Center that gears children and families to provide Christian education. In March 2021, she was hired as an Outreach Self-Advocate for People First Wisconsin.

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

Felicia got involved with self-determination was she kept hearing the phrase “self-determination.” She wondered what was, so she attended some conferences related to self-determination and disability employment. At those conferences, she also kept hearing the phrase, “pursue your purpose,” and she asking herself how she could pursue her purpose. A green light went on for her when she realized she could use self- determination to help her do it. She joined the SD Network because she wanted to be around people who were self-determined like she is. She also wants to help others who don’t know what self-determination is so they can be like her.

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

Felicia wants to share that, even though people may have multiple challenges in life, there is still hope. In July 2019, she founded a Christian oriented interview podcast entitled, “Kingdom Hope Connections Radio Show,” and in October 2019, I presented using technology to be healthy at the Self-Determination Conference. She also presented at another conference about substance abuse. In October 2021, she will be a presenter again at the Self-Determination Conference.

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

Felica shares that, “you can make a difference in your community and be a positive influence to people around you.” A resource Felicia would like to share is the is Abilities Travel Club. Abilities Travel Club is a travel tour business based in Milwaukee, WI and provide travel services in the State of Wisconsin.  We have traveled to camps, conferences, restaurants, hotels and museums. She explains that they’re looking forward to traveling to various places in the Midwest and the United States. There’s no cost to join and the meetings are held via conference calls. To find out more information, you can email abilitiestravelclub@gmail.com or like Abilities Travel Club on Facebook.

What are some of your hobbies?

 Felicia says her hobbies are boating, bowling, cooking, fishing, singing, traveling, writing, and volunteering.

***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.

Microsoft recently announced a big initiative to hire people with disabilities. A person from Microsoft explains that they're working with classrooms of all levels to make them more accessible. They're also building more technology into their devices to make that possible. Things like screen readers and captioning are being made available. They're also working with caregivers so they know how to assist people using this equipment in the community. 

Read more

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.