News

The state budget for the next two years has more money for nursing homes, an pay increase for in-home caregivers, and additional help for people with Alzheimer's and dementia, but it leaves out funding for improvements in services for people with disabilities. Medicaid is a key part in the budget. The budget doesn't include many of the proposals that would help Wisconsin residents with health care. There is an increase in nursing home workers and those who assist at-home residents in Family Care, but it leaves out direct care and personal care workers. 

Read more

Inclusivity is a professional network and employment platform with a committed focus on flipping the conversation about hiring people with disabilities around. Companies and organizations are encouraged to demonstrate efforts towards disability inclusion from the very beginning of the hiring process. One way to do this is to post workplace accommodations they may have previously experienced. 

Read more

It's widely known that people with developmental and intellectual disabilities are at much higher risk of getting COVID and dying from it. The Council on Quality and Leadership did a study on how the pandemic has impacted the quality of life of people with disabilities. The study found five outcomes which had the largest changes between 2019 and 2020. 

• People experience continuity and security;
• People interact with other members of the community;
• People participate in the life of the community;
• People have intimate relationships; and
• People choose personal goals.

See full report

Self-Determination Network News:

June 2021

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

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 Renee. This self-proclaimed “Benefits Nerd”  loves helping people with disabilities navigate their benefits and making them realize that they can work. Stop by this month's Member Spotlight to get to know Renee. 

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:

• Speak Up: Summer Plans
• Stewing with Stacy: I proved them wrong

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:

• Funding Opportunity for a Self-Advocacy and Technical Assistance Center: ACL's Administration on Disabilities (AoD) is seeking to fund one cooperative agreement  for a Self-Advocacy Resource and Technical Assistance Center. Applications due July 26th. 
• Continued Need for Accessible Diagnostic Medical Equipment: People with disabilities often have more medical problems than the average person, people continue to have problems physically accessing diagnostic equipment. Learn about what a recent report revealed. 
• Report Shows the Continued Caregiver Crisis is Taking a Toll: The Survival Coalition, which InControl Wisconsin is part of, continues to hear about how the caregiver crisis is having an impact on many lives of people with disabilities. Learn about what the showed. 
• Bills Would Help with Police Interactions: In recent years, there have been many problems with police interactions with people with disabilities. Read about two bills that would help with this.
• Launch of a Hotline for COVID Vaccine Information: The US Health and Human Services recently announced the launch of a hotline that will provide information about the vaccine to people with disabilities. Learn about this new hotline. 
• Listen now: People with disabilities have felt the impact of emergency situations more than the general population. To try to solve these inequalities in the COVID response, disability and preparedness specialists were placed in health agencies around the country to promote inclusivity of people with disabilities. Listen to this podcast about what they have worked on. 

Upcoming Events

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

• Medicare Virtual Fair: June 23rd, 2p.m. to 6p.m., Online  
• Webinar: Kitchens And Kitchenettes: July 1st, 1p.m. to 3p.m., Online 
• Webinar: Addressing Vaccine Hesitancy Among Direct Service Workers: July 1st, 2p.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.

We love our Marketplace! Microbusinesses run and created by people with disabilities are encouraged to apply. Artists can sell their products and/or services.

You will also have the unique opportunity to join our marketplace and sell online, not only at the Self-Determination Conference but all year long! Support is available to help you through the process. For more information about the All Abilities Market, visit www.allAmarket.org.

Applications must be submitted by September 1, 2021

Microenterprise Application

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.

Listen to the episode

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. 

Read more

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.

Read full report