News

Self-Determination Network News:

April/May 2020

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

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

• Watch:  For people with disabilities, COVID-19 is especially dangerous.  This short documentary talks about some of issues people with disabilities are facing.
• Technology Grant Opportunities:  The Administration for Community Living has opened up two grant opportunities on technology to promote independence and community living and employment research.   These opportunities close May 26th. 
• The Importance of Website Accessibility:  Website accessibility is a must these days.  Read about why website accessibility is so important especially during a pandemic.
• Effects of the Virus:  The Coronavirus has shaken the world to its core. People with disabilities are facing the same issues as everyone else are, but they have additional concerns. Read about some of the challenges they are facing. 
  
• Lifespan Respite Care Program Funding Opportunities: The Administration for Community Living has two grant opportunities for funding Lifespan Respite Care Programs. Learn about these opportunities. 
• CARES Act:  In March,  the President signed the Coronavirus Aid, Relief and Economic Security Act, or CARES Act, into law.  Read what it entails for people with disabilities.
• Can't Deny Care:  During this time of uncertainty and crisis, there have been reports of health care providers in some states discriminating against people with disabilities. The feds issues a statement saying it's illegal to do so. Find out what laws protect this.
• Popular Documentary:  A new documentary on Netflix produced by the Obamas is a popular in the disability community. Find Learn what it's about.
• Accessible Airline Seats:  Air travel for people with disabilities continues to cause a variety of issues. A company in Colorado has developed a prototype of a plane where individuals can take their own wheelchairs onto the plane.  Read about what needs to happen to get these seats on planes. 
• Rail Vehicle Guidelines:  In February, the US Access Board proposed updates to the ADA Accessibility Guidelines for Transportation Vehicles that apply to rail cars. Public comment on these recommendations is open through July 14th.
• Help and Be Helped:  As we continue coming together to support people with disabilities through the COVID 19 Crisis in Wisconsin, we must look for creative ways to meet the changing needs of this new normal. Check out this list of resources a workgroup put together. 
• Annual Report:  The Administration for Community Living recently released Annual Report on Centers for Independent Living. Find out what it includes. 
• Electronic Visit Verification Video:  The Wisconsin Department of Health Services has released an informational video about Electronic Visit Verification.  Learn how the system will work. 
• Pandemic Brings Hope for an Employment Accommodation:  Working from home has become the new norm for many people during this pandemic. Read about how people with disabilities are hoping that this will show employers that this is a reasonable accommodation in many circumstances. 
• Unique Worries:  For some people with disabilities, social distancing is literally not possible  Learn why some people with disabilities are at even at greater risk of contracting the virus. 
• Guidance on Accessible Restrooms and Drinking Fountains:  The U.S. Access Board has released technical bulletins on accessibility to restrooms, bathing facilities, and drinking fountains.   Learn what the technical bulletins explain. 

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 April, we shined the spotlight on Mary Clare. This life-long Wisconsinite has been an advocate for people with disabilities for many years. She has seen self-determination grow, and she's looking forward to watching it continue to expand.   Stop by April's Member Spotlight to get to know Mary Clare.

In May, we're shining the spotlight on Ashley. When she is not busy participating in Special Olympics or dancing with her friends, this vibrant young lady is out self-advocating!  Stop by this month's Member Spotlight to get to know Ashley.

Who should we shine the spotlight on next?

Stacy’s Journal

"Social distancing. Mitigation. Isolation. Safer—at—Home orders. Terms such as these didn’t have much meaning to most people until the beginning of March. Now, thanks to COVID 19, such vocabulary has become the new norm in today’s society. For most people with disabilities, a pandemic of this magnitude often brings on some unique challenges."  In April's entry, Stacy discusses the some of the challenges that she has encountered during this pandemic. What unique challenges have you faced during this time?

"I think this quarantine will bring out some positive aspects for people with disabilities."  In this month's entry, Stacy talks about finding silver lining during this pandemic. What silver linings have you found? We encourage you to share your thoughts and experiences as well.

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.

The theme of the channel is: Self-Determination is Empowerment. It’s a place where self-advocates can be seen and heard, connect with others, and mentor each other. The hope is that the channel can be used as a teaching tool and show examples of what is possible.

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:

• Coronavirus:  Tips For Staying Healthy 
• US Census:  Why is it Important?
• 10 Fun Things to do Online
• Technology for Independent Living
• My Safer at Home Plan
• Is Your Home Safe?

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

If you want to be notified every time we post a new video, click on the bell that is next to the subscribe button on Channel homepage.

Then, click the "All" bell.

That's all there is to it. You will now get an email notification every time a video is posted.

Upcoming Events

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

• Webinar: "Food Service Providers And The ADA":  May 20th, 1p.m. To 2:30p.m., Online 
• Webinar: "Supported Decision-Making: What Health Professionals Need To Know":  May 21st, 12p.m. To 1p.m., Online 
• Ability Now!: May 21st, 6:30p.m. To 7p.m., Online 
• Ability Now!: May 28th, 6:30p.m. To 7p.m., Online 
• Webinar: Using The ADA And ABA Standards - Chapter 5 General Site And Building Elements:  June 4th, 1:30p.m. to 3p.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.

The U.S. Access Board has released technical bulletins on accessibility to restrooms, bathing facilities, and drinking fountains. This material explains specifications for water closets, toilet compartments, showers, bathtubs, and drinking fountains in the ADA and ABA Accessibility Standards. Each guide clarifies common sources of confusion, answers frequently asked questions, and offers recommendations for best practice. Examples of compliant restrooms and bathing rooms are included to illustrate how various requirements can be met.

These bulletins are the latest installment to the Board's online guide to the ADA and ABA Standards, which currently covers the first five chapters of the standards. The guide also features a series of animations on different topics, including toilet and bathing facilities. The Guide to the ADA Standards addresses design requirements for places of public accommodation, commercial facilities, and state and local government facilities subject to the ADA. The Guide to the ABA Standards covers standards that apply to facilities that are designed, constructed, altered, or leased with federal funds.

The new guidance addresses most of the requirements for plumbing elements and facilities in Chapter 6 of the standards. Bulletins on other requirements of the chapter applicable to lavatories and sinks, washers and dryers, and saunas and steam rooms, will be issued at a later date.

Technical Bulletins on the ADA and ABA Standards (Chapter 6)

• Drinking Fountains  [PDF] [ABA version]
• Toilet Rooms           [PDF] [ABA version]
• Bathing Rooms        [PDF] [ABA version]

For people with disabilities, COVID-19 is especially dangerous.  This short documentary talks about some of issues people with disabilities are facing. Many people feel that legislation has fallen short on helping this vulnerable population. 

Watch the documentary

“Come on, Stace, let’s go for a ride,” my dad has said almost every day during this quarantine. Most people in today’s society had no choice but to quickly experience what it’s like to stay at home all day, everyday. For many people, this has been a huge lifestyle change. Many people are used to going to multiple places every day. Whether it’s to the grocery store, a hardware store, work, a restaurant or somewhere else, most mid aged people are accustomed to going somewhere every single day. However, for many people with health conditions or disabilities, staying home is the norm. 

As I’ve explained in previous entries, under normal circumstances, I leave my apartment once a week to go grocery shopping. Between care and transportation, it’s just not feasible to go out much more than that. I’ve gotten used to it, and it’s normal for me. Of course, thanks to my family, I do have the opportunity to travel for various things pretty often, but, for the most part, I’m used to staying at home all day alone, in my apartment.   I have learned to find enough stuff to do to keep busy, and, thanks to the Internet, I’m able to do almost everything I need to from my computer.  

So, I laugh to myself when I hear people complain about being “stuck at home.”  My parents aren’t very good at it. As I said above, my dad and mom go for a ride almost every single day. Most of the time, they drive around country roads and don’t even get out.  In the beginning, I went with, but it got boring. They don’t understand it, but I’d much rather stay home and actually do something. Whether it’s read a book, be on my iPad, or watch something on Hulu, i like doing something rather than aimlessly riding around in the back of a car. I’m guessing that’s because that’s what I’m used to doing.

That said, I think this quarantine will bring out some positive aspects for people with disabilities. It will show society that a whole lot more things can be accomplished from home. A lot more jobs can be done from home, which in several situations has been often a difficult accommodation to get. Another thing that will become more popular are Tele-health visits. As we know, transportation continues to be a huge obstacle for many of us with disabilities. Being able to meet with doctors online rather than going to a clinic or hospital would be much easier. I also believe other things like grocery delivery and online therapy sessions will become popular and more affordable. 

Another thing that has resulted from this is how we socialize. Yes, we all miss being able to give our family and friends hugs: however, the concept of using video chatting has exploded. Before the pandemic, video conferencing was mainly used for small meetings where one person physically couldn’t make it. Now, everyone is using it. Whether it’s a meeting with over 100 employees, a school classroom, a happy hour with friends, or something else, video conference calls have become a regular daily occurrence for many people. Again, for many of us who have disabilities, this is exciting news. Due to many different factors, social isolation is often not avoidable for many. Video conferencing becoming more popular in today’s society and will likely allow people to socialize more who otherwise wouldn’t be able to. 

Life as we knew it probably won’t ever be the same; however, like with everything, there are silver linings. We need to focus on what those are and stay positive for one another!

***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 Ashley.  When she is not busy participating in Special Olympics or dancing with her friends, this vibrant young lady is out self-advocating!  She encourages others to get involved also.  We are so fortunate to have her as a member of the network. 

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

Ashley is a 24-year old self-advocate diagnosed with PDD-NOS which is on the autism spectrum.  She has a passion for advocacy especially in the area of employment.  She does a lot of public speaking around the state of Wisconsin and has been featured on the TV, the radio and in the newspaper.  She was diagnosed when she was in kindergarten and had to deal with extensive bullying in elementary and middle school.  Ashley says that, “High School was a little better for me in the area of friends.  There was less bullying but it was a huge challenge to fit in and manage the school work”.  For that reason, she understands first-hand the challenges and painful experiences for people with special needs.  She sees the great value in self advocating and leading a self- determined life.  

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

Ashley is on the Board for People with Developmental Disabilities and Executive Committee for People First.   She first learned about self-determination when she attended the JumpStart! Program at Nicolet College.  She took several classes in this program and learned how to advocate for herself. During that time, she started Partners in Policy Making and started developing a network. She indicates that Disability Advocacy Day, in March, and the Self Determination Conference are both great opportunities to meet people who are self advocates and learn more strategies about living a self-determined life.

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

The most exciting thing happening for Ashley right now is the Self-Determination Channel. She says, “I love making the videos and educating our audience.  I encourage everyone to subscribe to this channel.” 

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

Ashley has several tips to share:  

1. You are going to have people tell you in life that you cannot do something due to your disability....you need to prove them wrong every time.  Anyone can do anything they put their mind to.
2. You own your journey and your limits so, put your best effort in on everything you do.
3. Don’t let your disability define you.  For example, she is not Autism....she is Ashley Mathy. Be proud of who you are.
4. You need to have the dignity to fail which means you are going to fail at some things but its important to get back up and learn from your mistakes.  It’s ok to fail.  

What are some of your hobbies?

Ashley loves to be in Special Olympics in her spare time.  Her favorite sport is track, but she also participates in bowling, bocce, and snow-shoeing.  Also, Ashley love to go horseback riding and takes advantage of every dance she can go to.  She loves to dance with her friends.

 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.

For some people with disabilities, social distancing is literally not possible. For people who need physical assistance to complete their basic needs, it's not possible to keep six feet apart from caregivers. This puts them at greater risk of contracting the virus. 

Read more

Working from home has become the new norm for many people. Due to the pandemic, many employers didn't have a choice but to figure out how to let employees work from home. Before the pandemic hit, working from home wasn't an option when people with disabilities asked for it as an accommodation. Now, many are wondering if things will change after the pandemic. The hope is that employers will be more open to letting people work from home. 

Read more

The Wisconsin Department of Health Services (DHS) is pleased to release our informational video about Electronic Visit Verification (EVV). Please share with members, participants, workers, and others who may be interested.

With coronavirus rapidly moving through the country, a federal civil rights agent warns that states may not use discriminatory tactics to decide who will be treated. An investigation was just launched March 28 to be sure states are not basing medical care on disability or other protected classes. Washington's and Alabama's laws dealing with coronavirus medical plans are what caused this investigation.

The fear of a shortage of breathing machines sparked these care rationing plans after Italy allowed doctors to choose who lives and who dies. In the US, it is reminded, we may not base these choices in a discriminatory way.

Read more

The Administration for Community Living recently released Annual Report on Centers for Independent Living is available by clicking here.  The report reflects the more than 236,000 individuals who, in Program Year 2018, benefited from community-based services to live independently in communities across our nation.

The report includes:

- The extent to which CILs receiving funds under Part C (Rehabilitation Act of 1973, as amended) have complied with the standards and assurances in section 725 of the Act;
- The identification of individual CILs in the analysis contained in that information; and
- Results of onsite compliance reviews, identifying individual CILs and other recipients of assistance under Part C.