News

ACL's National Paralysis Resource Center (managed by the Christopher & Dana Reeve Foundation) will open the new grant application cycle for the High Impact Innovative Assistive Technology (HIIAT) grants program on July 13. Eligible applicants are restricted to state programs funded through the State Assistive Technology Act, including implementing agencies and agencies subcontracted for Assistive Technology activities.

Launched in 2015 in partnership with ACL, the National Paralysis Resource Center’s HIIAT grant program is a competitive grant program that awards a small number of one-year grants of up to $75,000. These additional grant funds will help state programs expand their reach in the field of assistive technology through new innovations that will impact people living with paralysis in their homes and communities. Funding for this new cycle of grants was made possible through a cooperative agreement with the Administration for Community Living.

Awarded grant funds support innovative programs or services that:

• Target a specific, well-defined underserved population within the broader disability community in their state;
• Through assistive technology devices or services, increase access to services, increase the independence or inclusion of people within the underserved population within their communities; and
• When complete, will have a demonstrable, direct impact on people affected by the project.

Applications are due September 15.

Self-Determination Network News:

June 2020

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

2020 Self-Determination Conference

The Wisconsin Board for People with Development Disabilities (WBPDD) announced that the 2020 Self-Determination Conference will be virtual in October. There still will be opportunities to participate in the things we all enjoy such as attend sessions led by self-advocates, have chances to obtain get information from exhibitors, shop at a virtual micro-business store, have time to chat with friends, and much more. In this time of uncertainty, the WBPDD and its sponsors understand people maybe struggling. In hopes of easing the burden, registration for the conference will be free for everyone this year! Stay tuned for more information about registration in the coming weeks, but, until then, we invite you to listen to the popular self-determination song that's played at the conference every year. Peter Leddy changed the words a little bit. We hope you enjoy it! 

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. This month, we're introducing something a little different. One of the hosts on the Channel, Stacy, is going to do a vlog (which is a video blog) about her experiences living with a disability. We hope that you may be able to relate to some of the things she shares. We encourage you to share your own experiences and thoughts in the comments below the video. 

Check out the newest videos on the channel:

• Thank You #EssentialWorkers
• Don't Tell Marie What She Can't Do, She'll Prove You Wrong
• Stewing with Stacy: Let Me Introduce Myself

We encourage you to subscribe to the Channel (you can do by clicking the red Subscribe button on any of the video pages).

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.

In June, we're shining the spotlight on Julie. This awesome mother strives to help her daughter have control over her life and encourages other parents to do the same. Stop this month's Member Spotlight to get to know Julie.

Who should we shine the spotlight on next?

Stacy’s Journal

"I find it incredibly sad that there isn’t a better option for people like me. I don’t have all the answers, but, until the day I die, I continue to advocate to make things better."

In this month's journal entry, Stacy opens up her continual care struggles. She discusses her experience with trying another program. Have you had a similar experience? We encourage you to share your thoughts and experiences as well.

Take five minutes to check out what's happening on the Self-Determination Network:

• Coronavirus Heightens Caregiver Shortage:   For people with disabilities who are reliant on other people to assist them with all of their basic needs, the virus has brought some additional challenges. Read about some of the issues people are facing.
• House Approves Payment for People with Disabilities:  A new round of stimulus checks for people with disabilities and billions for home- and community-based services are part of a $3 trillion relief bill that faces an uncertain future.Learn more about this bill. 
• Guidelines for Voc Rehab Services:  New guidance from the feds suggest that Vocational Rehabilitation agencies can continue providing services during the pandemic, but adjustments will be needed. Find out what is being done to keep people safe. 
• Wheelchair Accessibility Feature:  Google Maps now has a feature that indicates whether or not a place is wheelchair accessible.Learn how it works. 
• Be Inspired:  Two self-advocates are on an unique mission to raise awareness for people with disabilities. Read about what they're doing. 
• Self-direction Model Becoming More Popular:  With the pandemic, living in a facility setting has become much more dangerous. Read about why people are choosing the Self-direction model more and more these days. 
• Website Accessibility Not a Priority:  According to a recent study, most organizations don't do accessibility testing on their website. Learn what else the study found. 
• Increase the Affordable Care Act: The Coronavirus has resulted in job loses or income changes, which has had an effect on health care. Learn why many people feel that Congress should pass a law--or laws--that would increase access to health insurance through the marketplace created by the Affordable Care Act.
• Online Disability History Exhibit:  The Smithsonian put together an online exhibit about the history of disability in the United States. Find out what it includes.
• Resource for Job Seekers:  Finding employment is hard for everyone right now. Learn about a helpful resource for job seekers with disabilities.
• Positives During a Pandemic:  The pandemic has caused havoc across the world, but it has also brought out some positives for people with disabilities. Learn about going virtual has been a huge positive for students with disabilities at one Milwaukee theater. 
• Hospital Visitor Policies:  When the pandemic hit, hospitals quickly no visitors policies into effect. Often, people with disabilities rely on support from family and friends to effectively communicate with medical staff.  Read about what laws allow people with disabilities to have attendants in the hospital to assist them.  

Upcoming Events

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

• Webinar: Virtual Wellness: June 18th, 1p.m. to 2p.m., Online
• Webinar: Partners With Business: Building Capacity With Employers And Service Providers: June 25th, 10:30a.m. to 11:30a.m., Online
• Webinar: Partners With Business: Building Capacity With Employers And Service Providers: June 30th, 9a.m. to 10a.m., Online
• Webinar: Using The ADA And ABA Standards - Chapter 6: Plumbing Elements And Facilities: July 2nd, 1:30p.m. to 3p.m., Online
• 2020 Janesville Adaptive Water Ski Clinic:  July 10th, 9a.m. to 3p.m., Traxler Park on the Rock River, Janesville WI

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.

When the pandemic hit, hospitals quickly no visitors policies into effect. Often, people with disabilities rely on support from family and friends to effectively communicate with medical staff. Under laws such as the Americans with Disabilities Act (ADA)  accommodations like these are required. In response to a recent federal complaint filed regarding discriminatory "no visitor" policies, the Office for Civil Rights (OCR) at the U.S. Department of Health & Human Services announced a resolution making clear that federal law requires hospitals and the state agencies overseeing them to modify policies to ensure patients with disabilities can safely access the in-person supports needed to benefit from medical care during the COVID-19 pandemic..

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The pandemic has caused havoc across the world, but it has also brought out some positives for people with disabilities. For this Milwaukee theater, going virtual has been a huge positive for students with disabilities. The Students who have sensory issues love being able to do classes in their own homes where they're more comfortable. Transportation isn't an issue for students with physical disabilities. 

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Finding a job for anyone is difficult right now. It's no different for people with disabilities. The Department of Vocational Rehabilitation is often a good place to start. On their website, people can do things such as search for jobs and participate in career counseling and training. 

Read more

Meet Julie.  This awesome mother strives to help her daughter have control over her life. She strongly encourages other parents to do the same. She is always looking for ways to help her daughter make her own choices. We’re so fortunate to have her as a member of the Network! 

What's your story?  Tell us a little bit about yourself.  How are you involved with self-determination? Why did you join the SD Network?

Julie is the mother and legal guardian of Emily who has different abilities. She joined the Self-Determination Network to see if she could get ideas for Emily to be more self-determined.  “Given that she is quite challenged in terms of using her mind and body, I wanted to learn whatever I could to work around limitations,” she explains.  When she obtained guardianship, she felt a strong obligation to help Emily have control of her life.  This weighed heavily on her, and she tried to find more ways to help Emily make her own choices.  One way that she does this is considering Emily’s response to an activity.  If she doesn’t want to do something, Julie will give her five minutes and then try again.  She says, “many times, she just doesn’t like change and is comfortable where she is.”  Julie explains they don’t always have a way to communicate the new activity to Emily, so she doesn’t know that it will be fun (or necessary).  Julie shares that Emily is deaf and blind.  They use some hand-under-hand signing with her.  “If she doesn’t want to “hear” what we are telling her, she puts her hands behind her back and emphatically shakes her head no” Julie adds. 

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

Julie is excited that the weather is finally warming up. This allows Emily the opportunity to do what she loves best—go for walks in her wheelchair and sit in the screened porch and enjoy the outside. 

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

To help other parents help young adult children with self-determination, Julie suggests to offer options and wait times when possible. She encourages parents not to just “do things for them” without explaining what you’re going to do and why.  “When Emily doesn’t want to put her coat on, I sign “It’s cold outside.  Coat on.” Instead of just pushing her arms through the sleeves.  Sometimes, that’s all she needs to decide that she will wear her coat,” she explains. 

What are some of your hobbies?

 When we are not quarantined, Julie shares that Emily goes to an adult day program.  There, they offer opportunities to socialize, practice skills and be in the community.  Emily joins activities like a trampoline park, swimming, shopping, and outdoor walks.  She is well-loved there, and we have found awesome caregivers who can provide respite for parents.  They take her to restaurants, clay class, and other activities.  Julie adds that Emily loves to be outdoors, when it is nice out.  She enjoys the sun and breeze on her body.  She has a hot-tub (from MakeAWish) that she really loves.  “She has special water wings that help her float independently and I can tell that makes her happy,” Julie says.

***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.

EveryBody, an online exhibit put together by the Smithsonian, is meant to tell the history of what it has been like to have a disability in the United States. It looks at objects that people with disabilities have used, including a sewing machine, utensils with chunky handles, and past objects used to raise money for people with disabilities. Twenty-five percent of American adults have a disability, and this exhibit shows how they have been a part of American history.

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The coronavirus has resulted in job loses or income changes, which has had an effect on health care. Many people feel that Congress should pass a law--or laws--that would increase access to health insurance through the marketplace created by the Affordable Care Act. This is especially important during a pandemic and severe recession. Congress could make the marketplace plans more accessible and affordable. States that run their own marketplaces did this, and it allowed more people access coverage.

Read more

Although most say they deem product testing by people with disabilities a priority, according to a recent study, most organizations still don't do accessibility testing on their website.  There were many notable points that came from this study. 

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As we've heard about, this pandemic has posed additional challenges for the elderly and those with disabilities. For people in long-term facilities, it would be much safer to live in their own home. People who are fortunate enough to be able to stay at home and have in-home care are finding workers to be less available during COVID. There is an alternative to institutional care that's available under Medicaid and the Veterans Directed Care programs. The self-direction model allows people with disabilities to enjoy living in their own home rather than a facility. Given the scope of this pandemic, many people feel that Congress should step up funding for self-direction programs. 

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