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People living with disabilities have felt the burden way more than the general population in past emergency situations due to inequities in preparedness and response. To address and prevent inequities in the COVID-19 response, ASTHO placed 14 disability and preparedness specialists into health agencies around the country to promote inclusivity of people living with disabilities.

On this podcast, they explore ways that two of these disability and preparedness specialists have worked to address the needs of people living with disabilities in their areas. Experts share their drive for this work and what their states are doing to promote equity for people living with disabilities.

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Today, U.S. Health and Human Services (HHS) announces the launch of a first-of-its-kind national hotline to connect people with disabilities to information and services to improve access to COVID-19 vaccines.

The Disability Information and Access Line (DIAL) is now available to help people with disabilities find vaccination locations in their communities, assist callers with making vaccination appointments, and connect callers to local services – such as accessible transportation – to overcome barriers to vaccination. The hotline also can provide information and resources to answer questions and address concerns about the vaccines and can connect callers to information and services that promote independent living and address fundamental needs, such as food, housing, and transportation.

DIAL is operated as a collaboration between a consortium of organizations serving people with disabilities and the National Association of Area Agencies on Aging (n4a). The consortium includes:

• Association of Programs for Rural Independent Living (APRIL),
• Association of University Centers on Disabilities (AUCD),
• Independent Living Research Utilization (ILRU),
• National Association of Councils on Developmental Disabilities (NACDD),
• National Council on Independent Living (NCIL),
• National Disabilities Rights Network (NDRN), and
• The Partnership for Inclusive Disaster Strategies.

This collaboration benefits from the disability networks’ extensive knowledge and expertise in meeting the needs of people with disabilities across the U.S. and n4a’s decades of experience operating the Eldercare Locator, the only federally funded national information and referral resource that supports consumers across the spectrum of issues affecting older Americans. By leveraging these capabilities, ACL was able to launch this critical tool in less than six weeks.

DIAL was created through a partnership between the Administration for Community Living and the Centers for Disease Control and Prevention to help older adults and people with disabilities get COVID-19 vaccines. With support from CDC, ACL also:

• Increased the capacity of the Eldercare Locator to connect older adults, including those who are unable to leave their homes and those who live in underserved communities, to local COVID-19 vaccination resources.
• Issued nearly $93 million in grants to the aging and disability networks in every state and territory to provide critical services to overcome barriers that are preventing millions of those most at-risk for serious illness and death from COVID-19 from receiving vaccines.

About the Disability Information and Access Line (DIAL)

The Disability Information and Access Line (DIAL) connects callers to information about how to access the COVID-19 vaccine and related supports for people with disabilities. DIAL connects callers to vaccine sites and provides information related to barriers to vaccination by referring callers to local and national disability resources.

acl.gov/dial | 888-677-1199 from 9:00 AM to 8:00 PM ET | DIAL@n4a.org

Ever wonder when enough is enough? Whether it’s referring to a person eating too much for dinner, a parent dealing with an unruly child, picking up overtime at work, or another scenario, almost everyone has had to say “enough is enough.” We all deal with stress and anxiety differently. Some people headaches, some feel the need to exercise more, others eat more. It varies person-to-person. Whatever people do to “de-stress” usually requires them to get away from the situation at-hand. There are many different ways to release stress. Ideally, whatever stress relief activity people use, once they do it, they can go back and continue handling the circumstances. Stress is part of life. We all have it. It’s part of life. People with disabilities are no different—in fact, in many ways, I feel like we have more stress than the average person.

If you’ve read my past entries, you probably know that kind of a go-getter by nature. When my parents told me that the insurance company deemed me “unemployable” at the age of four (without even meeting me), I knew I had to prove them wrong.  I’ve done that about four times in my life between mentoring, my different work experiences, and being a business owner where I’m independently contracted with InControl Wisconsin. When someone doubts my abilities, I like to prove them wrong over and over again. In early March, I was hired to do another part-time advocacy job by a different disability organization. It was very part-time, they were more than willing to accommodate my needs, and I absolutely loved the work I was doing. It was about double the hours I currently worked. It was all virtual and I thought I could easily handle doing both jobs. Boy, was I wrong. I lasted about two-and-a-half months before I made the difficult decision to resign. In that time, I had two trips to the ER, an emergency surgery, a week-long hospital stay, and countless trips to the doctor. During all of this, I was trying to do my best with keeping up with both positions all while trying to manage my caregivers, and just keeping up with normal life. I think part of the problem was that when I have things to do, I work nonstop until I get them finished. I don’t take time to relax until I have everything done. That’s just the way I am, so I was working on stuff nonstop for weeks on end without taking time for myself.

It was my last visit to the ER that made me realize I needed to slow down. I went in because my spasticity had been so bad for so many weeks that my neurosurgeon (who I saw earlier in the day) wanted me to get scans done because he thought maybe I had an infection or something. We were all trying to figure out why my spasticity was so bad. In the ER, they literally had to sedate me because my muscles were so bad. I had a full workup done and every single thing came back normal. Normal is a great thing, but we needed to figure out what was causing all of the issues. I slept for almost 18 hours straight due to the medication they gave me. The next day, when I was finally alert, my mom told me that everything came back fine. I then made the decision that I needed to step down from my new job. I know my parents were waiting for to come to that realization. They didn’t want to tell me that I should, but they wanted me to realize that I couldn’t handle that much.

I won’t sugarcoat it’s been difficult coming to terms with the fact that my body can’t handle very much stress. My mind wants to be able to do so much more, but my body says, “sorry, no way!”  I’m learning that I need to let my body guide me. I have said “no” to more things in the last few weeks then I ever have before. It’s certainly not easy, but my health has to take priority.

It’s more than just saying no to things. In my situation, it’s also about physically being comfortable. The other day, when my mom and I were on the way to another medical appointment, I told her about how I was planning to wear a dress with tennis shoes to our big 4^th of July party. This won’t make any sense to most people, but when my feet are fully protected by wearing tennis shoes, my whole body is calmer. I have lots of dressy shoes and sandals I’ve worn to wedding and special occasions, but my body always is more tense when I wear them. I was telling mom how people will probably laugh at me at the party, but I don’t care—being comfortable is more important. She agreed.

Another example of enjoying life in the moment is getting what you want when you want it. I can’t go into financial details for obvious reasons, but I’m learning that I should get what I want and not wait for the “right time.” People with disabilities who receive government benefits are really limited financially. We can’t really save too much money (yes, I have an ABLE account, but it has so many stipulations that I have to be really careful); if we go over a certain amount in our account, we lose things like insurance and long-term care services. Many of us would never be able to afford to pay out of pocket for insurance and care services, so we have to very vigilante about our finances. I’m essentially learning that I need to spend money on things that I want rather than waiting for another time.

At age 36, do I feel like a 90-year-old? Yes, in so many ways. As I’ve said in many previous entries, Cerebral Palsy is considered a non-progressive condition; however, as we get older, our bodies seem to age faster than the average person. For me, slowing down and reducing my responsibilities has seemed to help me physically quite a bit. I still have problems with my spasticity from time to time, but I’m not stressed if I need to take the time to relax. I know that I have time to do what needs to be done. I don’t have to rush anything.

How do you know when enough is enough? That’s a good question. I’m still trying to figure that out. Personally, I’m learning that I have to let my body be my guide. If I start feeling too much stress (of any kind), my muscles will let me know. People need to listen to their body. Nobody else is going know when “enough is enough” for another person. Life is too short. Relax. Take time for yourself. Be comfortable. We only get one chance to live. Enjoy it!

***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.

Police interactions with people with disabilities have been talking points for many years. Police officers often aren't taught how to interact with people with disabilities which leads to harmful situations. A senator is reintroducing two bills that would help with this problem. 

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Survival Coalition of more than 20 disability organizations continues to hear from people with disabilities, their families, and their supporters that the pandemic has taken a disproportionate toll, starkly accelerating the direct care worker crisis and leading to increased health and safety worries, more families leaving the workforce to care for loved ones, and high levels of stress. Survival surveyed people with disabilities who use home and community supports, along with their families. The results and stories in the attached report are worrisome and deserve immediate action in the state budget.

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Meet Renee. This self-proclaimed “Benefits Nerd”  loves helping people with disabilities navigate their benefits and making them realize that they can work. She believes Self-Determination has multiple meanings in the Benefits Analysis world, and she has a multitude of knowledge about navigating the system. We are so fortune to have her as a member of the Network!

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

Renee has been working in the Disability field for about 13 years. She has been a Certified Work Incentive Counselor and Benefits Analyst and a Social Security Administration partner since 2013. She currently works with IBA Resources, LLC. in Wausau, WI and works with people of all ages and disability types.  She explains that she is a partner with the Social Security Administration and is trained by them to counsel individuals with Social Security and other Federal Benefits who also want to go to work. 

She loves talking with individuals and families who receive Social Security, Medicare, Medicaid, FoodShare, Veterans, and other benefits about how they can get a job in the community even if they are receiving those benefits! “I call myself a "Benefits Nerd" and am here to help if you are worried that getting a job will mean you will lose your benefits,” she exclaims!  

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

Renee shares that Self-Determination is so important in her field--being able to make good financial choices when you want a job and receive benefits is all about Self-Determination! Everyone should have input on what type of employment they want. Self-Determination can also mean having a goal of working off of Social Security or other Benefits. It is okay to want to work full time and there are many ways that goal can be achieved. To her, Self-Determination can also mean having all the tools and information you need to make the best choices in your life. She explains that knowing what type of Social Security or Health Care you have as well as knowing any other benefits you receive (for example FoodShare or Managed Care) and how these benefits are used is empowering information that can only help you with whatever goals you have. “That is the reason I joined the SD Network: Benefits knowledge helps tremendously with Self-Determination steps and goals,” she says. 

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

One of the biggest tools Renee seen created in the last couple of years to help with Self-Determination is the creation of the MYSSA accounts on the Social Security website (www.ssa.gov). She explains that creating one of these accounts can give the ability to report wages from work, request a new Social Security card, check your earnings record, change your address or phone number and many other things. This website saves everyone time, transportation, and phone calls to your local Social Security office. 

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

Renee encourages people not to be afraid to ask the big life goal questions if you receive Social Security or Medicare/Medicaid: Do you want to get married? Do you want to go to college? Or own your own business someday? Or work a full-time job? She says, “if you have a family member or loved one who is worried you will lose your Healthcare or Social Security, let's talk about how to keep those and reach your goals!”

She explains that everyone's Benefits puzzle looks a little different. What you can earn with work might be very different from a family member who also receives Social Security. Find out what the rules and safety nets go along with your own benefits!

What are some of your hobbies?

Outside of work, Renee is involved in the local Community Theater. She likes to direct plays and musicals. She also likes to play board games and travel around the U.S. She also has two very fluffy and naughty cats that she takes care of.

***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.

People with disabilities experience much higher risk of preventable disease and poorer health outcomes than the general population, yet adults with disabilities continue to face major physical barriers that prevents access to health care and leads to unmet health care needs. One of the biggest barriers is the need for more accessible medical diagnostic equipment. The National Council on Disability released another report about this. The findings are very interesting. The need for accessible medical equipment really shows in the statistics in the report. 

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ACL's Administration on Disabilities (AoD) seeks to fund one cooperative agreement  for a Self-Advocacy Resource and Technical Assistance Center. This award will be made as a Project of National Significance as described in the Developmental Disabilities Act of 2000.

The Self-Advocacy Resource and Technical Assistance Center will:

• compile resources, best practices, training curriculum, and success stories for an online clearinghouse accessible to the public;
• provide training and technical assistance to self-advocacy organizations across the nation;
• operate a fellowship program that offers leadership development and employment opportunities for people with intellectual and developmental disabilities;
• and collaborate with a diverse range of organizations including self-advocacy organizations, disability-related nonprofits, universities, state government agencies, and others to achieve the goals of the project.

The Center will expand work around an ‘Easy Read Language’ initiative by working with state and regional self-advocacy organizations to help them build relationships and secure contracts with state and local agencies to develop easily read documents. Finally, the Center will develop procedures and tools to evaluate the usability, frequency of use, and impact of tools and other materials on the stated outputs and outcomes.

View more details and application instructions.

Please visit the link above for more details about the funding opportunity and application process. This grant opportunity closes on July 26, 2021.

Self-Determination Network News:

May 2021

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

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. 

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