News

“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. 

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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. 

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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.

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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.

In 2019 the Department of Health and Human Services’ (HHS) Administration for Community Living (ACL) and the Centers for Medicare and Medicaid Services (CMS) requested that the National Quality Forum (NQF) convene a committee of experts with lived and professional experience in long-term services and supports (LTSS), and with the acute/primary/chronic care systems. This Committee aims to provide ACL, CMS, federal and state entities, and the general public with a consensus-based, multistakeholder view of multiple areas of person-centered planning.

The Committee addressed five key concerns related to designing practice standards and competencies for person-centered planning:

• Person-first definition of person-centered planning
• Core set of competencies for persons facilitating the planning process
• Systems characteristics that support person-centered planning
• Framework for quality measurement within person-centered planning
• Research agenda to advance and promote person-centered planning in long-term services and supports

The Person-Centered Planning and Practice Final Draft Report (PDF) 36-day comment period is open through May 15, 2020 at 6:00 pm ET.

The public is invited to submit comments on the project page. Registration is required for submitting comments. 

Comments may also be submitted through the attached feedback form (PDF). The completed form should be emailed to pcplanning@qualityforum.org.

The Committee will convene on June 1, 2020 from 1:00-3:30 pm ET to review and adjudicate comments submitted on the draft final report and the Committee’s recommendations. 

Person-centered planning is especially important in the context of the nation’s COVID-19 public health emergency, where individuals with unique long-term services and supports needs across the care continuum are receiving care in a variety of settings.

Contact pcplanning@qualityforum.org with questions, concerns, or accessibility difficulties for reviewing the report and submitting comment.

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.  An essential and growing need is resources for caregiver matching/temporary hires and collaboration regarding workforce and PPE needs.

Please see the following resources:

Help and Be Helped Communication Tool * with key resources, including:

• • In-home Supports Connection Registry
    • Respite Care Association of Wisconsin (RCAW) has modified its Respite Care Registry to connect temporarily displaced workers and others during the COVID-19 pandemic with in-home service provider agencies and self-directed consumers
      • If you or someone you know is interested in providing in-home supports during the COVID 19 crisis, whether that be via direct hire with consumer or in-home provider agency, please sign up here to join the RCAW Registry
      • If you are someone who needs in-home supports, please subscribe here to search RCAW’s Registry

• • Assisted Living Employment Opportunities
    • WCCEAL (Wisconsin Coalition for Collaborative Excellence in Assisted Living) has a comprehensive listing of assisted living member agencies with permanent and temporary employment opportunities to provide supports in an assisted living setting. 

• • Searchable Listing of Residential and Non-residential Organizations in Wisconsin
    • • Disability Services Provider Network (DSPN) has compiled a spreadsheet that can be filtered by city, county and home setting type
      • See Provider Listing attached* – also available soon on DSPN website!
      • We encourage agencies to use this connection tool to offer or ask for help from one another

• • “Listen and Share” Virtual Meetings - WI APSE (Association of People Supporting Employment First) is hosting weekly provider “Listen and Share” virtual meetings throughout April – see Help and be Helped for more info.

• • Latest PPE Information from the Wisconsin Department of Health Services 

We are in this together!

Sincerely,

Communication & connection workgroup:

RCAW – Lisa Schneider & Rachel Watkins Petersen

DSPN – Jeff Kaphengst

TMG – Patti Becker

INCLUSA – Tish Burmeister

WI APSE – Molly Keaveny

The U.S. Access Board has extended the deadline for comments on its update of accessibility guidelines for rail cars to allow the public and interested parties more time to submit feedback. As indicated in a notice published in today's Federal Register, an additional 60 days is being added to the comment period.

In February, the Board initiated rulemaking through an Advance Notice of Proposed Rulemaking to update requirements in its ADA Accessibility Guidelines for Transportation Vehicles that apply to rail cars, including those used in rapid, light, commuter, and intercity rail systems. The notice outlines the Board's plan to update these guidelines according to recommendations from an advisory panel it chartered, the Rail Vehicles Access Advisory Committee. The advance notice seeks comment on the committee recommendations to enhance provisions that cover vehicle communications, boarding and alighting, on-board circulation, seating, and rooms and spaces. It also poses a number of questions from the Board on specific topics.

Comments are now due July 14, 2020, instead of May 14. The advance notice, which includes instructions for submitting comments, is posted on regulations.gov (Docket ATBCB-2020-0002). For more information, contact Juliet Shoultz at (202) 272-0045 or shoultz@access-board.gov for technical questions or Wendy Marshall at (202) 272-0043 or marshall@access-board.gov for legal questions.