News

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..

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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. 

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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. 

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