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Self-Determination Network News:

May 2021

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New Bills Could Make it Harder for People with Disabilities to Vote

Wisconsin legislators have introduced bills that will make it harder for many people to vote. The Wisconsin Disability Vote Coalition has put together a summary of these bills and how it would impact people. We encourage you to look at this and, if you have concerns about the bills, to contact your legislators. 

Stay Up-to-Date about Long-Term Care Advocacy 

InControl Wisconsin is sending a letter to the Joint Finance Committee of the state legislature asking the Committee to ensure that if additional funding is added to the budget for Long-Term Care in general or for the workforce crisis, then IRIS should get its fair share. Family Care and nursing homes both received increases in the last two state budgets, but IRIS did not. 

The Wisconsin Long-Term Care Workforce Alliance does frequent videos about what's happening with the workforce advocacy. Check out this website for updates on what's happening with the workforce crisis. There are videos on how to talk to legislators about your experiences and concerns. Let your voice be heard! 

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 Felicia. This self-advocate has been proving doctors wrong since she was born. Stop by this month's Member Spotlight to get to know Felicia. 

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:

• My favorite app

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:

• No Oscar, but Nomination a Win for the Disability Community: The popular documentary, "Crip Camp," didn't win an Oscar, but many people with disabilities feel the nomination alone was a win. Learn why this is. 
• Inclusive Deodorant: 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. Read about a how one company designed an inclusive deodorant container. 
• Initiative to Hire People with Disabilities: A large technology recently announced a big initiative to hire people with disabilities.  Find out what the company plans to do. 
• Wisconsin Lawmaker Asked for Accommodations: A Wisconsin lawmaker is asking the Assembly to allow him to participate in floor sessions remotely. Read about the ongoing situation.  
• American Rescue Plan to Help Medicaid Services: The American Rescue Plan has over $12 billion for states to expand Medicaid home-and-community-based programs for people with disabilities. Find out what the plan entails.  
• Emergency Broadband Benefit Program: The Emergency Broadband Benefit is a Federal Communication Commission program to help families and households struggling to afford internet service during the COVID-19 pandemic. Learn more about this program and find out how to apply. 
• Vaccine Survey Findings: Two research studies have been done on vaccine statistics for people with disabilities. Read about what the studies found. 
• Seeking Applicants for Emergency Preparedness Committees: The Office of Emergency Preparedness and Response is seeking applicants for two new committees to provide recommendations on enhancing public health preparedness, response, and recovery for people with disabilities. Applications are due June 12th. 
• Family Caregiver Report: A new report summarizing listening sessions about the struggles and needs of family caregivers was recently released. Learn what the sessions revealed.
• Spending Flexibility: States have lots of flexibility on what they can use the extra $12.67 billion for Medicaid home-and-community-based services on. Learn what states are using the money for. 
• New Vaccine Guidelines for Facilities: Government officials have released new guidelines for the COVID vaccine at facilities serving people with disabilities. Find out what they say. 

Upcoming Events

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

• Webinar: Assembly Areas: June 3rd, 1:30p.m to 3p.m., Online
• Medicare Virtual Fair: June 23rd, 2p.m. to 6p.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.

Government officials have released new guidelines for the COVID vaccine at facilities serving people with disabilities. Long-term care facilities must educate staff and residents about the vaccine as well as offer it. They also have to report vaccination status of residents and staff to the CDC on a weekly basis. The guidelines don't require people to get the vaccine. For now, the rule only applies to certain types of facilities, but CMS is taking public comment on making a similar rule for places such as group homes and supervised apartments. 

Read more

States have lots of flexibility on what they can use the extra $12.67 billion for Medicaid home-and-community-based services on. The funding is part of the American Rescue Plan. States can use the money for everything from getting people off waiting lists to increasing wages for caregivers. Funding must be used to “supplement, not supplant” existing services, the guidance states, meaning that it has to be spent on home and community-based services that were not available under the Medicaid program as of April 1.

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A new report released this week by the National Academy for State Health Policy (NASHP) shares information collected from family caregiver listening sessions. The listening sessions were designed to provide multiple forums for family caregivers to share their challenges and needs, and recommendations for services, supports, and policies to address these needs. This report, which was written by the University of Massachusetts at Boston and Community Catalyst, is a component of the Recognize, Assist, Inform, Support, and Engage (RAISE) Family Caregivers Act of 2017, and is part of ACL’s work to implement the Act.  

The family caregiver listening sessions included a range of diverse caregivers, from teen caregivers to grandparents providing care, and caregivers of varying racial and ethnic backgrounds. The listening sessions directly captured the emotional and financial stresses caregivers experience, and their priorities and concerns, including respite, caregiving education and training, and financial considerations, including direct pay for caregiving, workplace flexibility, and tax policy changes that support caregivers.  

Visit the RAISE Act Family Caregiver Resource and Dissemination Center to read the report.

The Office of the Assistant Secretary for Preparedness and Response (ASPR), in the Department of Health and Human Services (HHS) Office of the Secretary has announced it is establishing two new committees to provide advise and recommendations to support and enhance public health preparedness, response, and recovery to meet the needs of older adults and people with disabilities.

National Advisory Committee on Seniors and Disasters

This advisory committee will provide recommendations to the Secretary of HHS for meeting the unique needs of older adults. ASPR shall provide management and administrative oversight to support the activities of the advisory committee. See the detailed announcement published in the Federal Register.

The Office of the Secretary is accepting application submissions from qualified individuals who wish to be considered for membership on the advisory committee. Up to seven new voting members with expertise in senior medical disaster planning, preparedness, response, or recovery will be selected. Please visit www.phe.gov/​nacsd for all application submission information and instructions. Application submissions will be accepted until June 12, 2021.

For additional information contact: Maxine Kellman, DVM, Ph.D., PMP, Designated Federal Official for National Advisory Committees, Washington, DC, Office (202) 260-0447 or email maxine.kellman@hhs.gov.

National Advisory Committee on Individuals with Disabilities and Disasters

This advisory committee will provide recommendations to the Secretary of HHS about the medical, public health, and accessibility needs of individuals with disabilities related to emergencies. ASPR shall provide management and administrative oversight to support the activities of the advisory committee. See the detailed announcement published in the Federal Register.

The Office of the Secretary is accepting application submissions from qualified individuals who wish to be considered for membership on the advisory committee. Up to seven voting members with expertise on disability accessibility, disaster planning, preparedness, response, or recovery will be selected. Please visit www.phe.gov/​nacidd for all application submission information and instructions. Application submissions will be accepted until June 12, 2021.

For additional information contact: Maxine Kellman, DVM, Ph.D., PMP, Designated Federal Official for National Advisory Committees, Washington, DC, Office (202) 260-0447 or email maxine.kellman@hhs.gov.

The American Association on Health and Disability (AAHD) has released two research products that resulted from the AAHD Vaccine Hesitancy Survey Among Adults with Disabilities, a rapid, real-time online study of the perspectives of adults with disabilities on the COVID-19 Vaccine.

View report

The Emergency Broadband Benefit is a Federal Communication Commission (FCC) program to help families and households struggling to afford internet service during the COVID-19 pandemic. This new benefit will connect eligible households to jobs, critical healthcare services, virtual classrooms, and more.

The FCC has announced that eligible households can apply for the program starting May 12, 2021 in three ways: 

1. Contact your preferred participating broadband provider directly to learn about their application process.  
2. Go to GetEmergencyBroadband.org to apply online and to find participating providers near you.
3. Call 833-511-0311 for a mail-in application, and return it along with proof of eligibility to: Emergency Broadband Support Center, P.O. Box 7081, London, KY 40742. 

Individuals who use videophones and are fluent in American Sign Language (ASL) may call the FCC’s ASL Consumer Support Line at (844) 432-2275 (videophone).  

On April 13, the FCC and ACL hosted a webinar that provided an overview of the benefit, eligibility criteria, how to apply, and the FCC’s partner toolkit materials. Webinar materials are now available:

• Webinar recording
• Webinar transcript
• Webinar slides: PDF, Word

An interesting op-ed was published in The Hill about how the pandemic has brought the need for home-and-community-based services to the Forefront. The American Rescue Plan Act has over $12 billion for states to expand Medicaid home-and-community-based programs. This is a great opportunity to invest in a solution. For many people, self-directing their home-and-community-based services can be the best option to remain independent and safe. The pandemic has highlighted the importance of self-directed. People who self-direct are able to feel safe knowing their workers have taken precautions..

Read more

A Wisconsin lawmaker is asking the Assembly to allow him to participate in floor sessions remotely. The accommodation was made many times during the pandemic. Over a year ago, they changed the rules to allow people with disabilities to participate in committee meetings over the phone, but didn't allow it for other meetings. 

Read more

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.