News

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.

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.  Regardless of background, race, economic status, gender, beliefs, or any other factor, almost every single person in the country has been affected by this pandemic in some way.  Whether its businesses closing leaving you without employment, having to cancel elective medical appointments, concerts and sporting events being canceled, wearing gloves and masks to get groceries… the list is endless.  For most people with disabilities, a pandemic of this magnitude often brings on some unique challenges.

When the pandemic started in early March, I was in the middle of switching care situations (which I will write about another time).  Due to this, things were already in limbo and I didn’t have enough workers as it was.  I was at my parents’ house when Governor Evers placed the state of Wisconsin under a Safer-at-Home order.  That meant most of my care workers I had would be going home, as they are college students and their classes would all be online.  All of a sudden, and for the unforeseen future, we all have had to become homebound.  

At my parents’ house, while I love and appreciate all they do for me, it is totally different living with them again--for now over a month.  First, I laugh because while most people are learning to work from home, I work from home all the time, but now at my parents, I don’t have all the technology, so working looks different.  I’m doing my best. Second, while all my basic needs are met, I’m used to and miss having someone with me just to do what I need and want for a certain number of hours per day.  While my parents help me with what needs to be done, I feel like I can’t be too picky with my needs.  For example, I’m on their schedule, so I have to go to bed much earlier than normal. 

For people with physical disabilities, like myself, social distancing when you require assistance with basic needs is not possible.  For those who do have agencies, or many different people coming into help, the desire for masks and gloves is there, but from what I’m hearing, they are still in short supply.  Personally, I have enough pairs of gloves for my workers, but am not certain about what to do about masks.  Everyone has their own individual preference.

For me, the social isolation, is not really a big deal.  I do miss seeing my aides because I ‘ve become friends with most of them, but I normally don’t go anywhere except the grocery store regularly each week.  For others with disabilities, this might be the worst and most difficult part of this pandemic.  Zoom, Google Hangouts, Skype, and Facetime all help, and are the new normal for us now. 

Entertainment looks different for everyone.  For me, I have stayed close with friends and family, using technology.  I have caught up on many of my shows that I like with Netflix and Hulu.    I also read a lot and have continued to do that.  I have gone out for walks in my parents’ neighborhood, but have not been in any type of stores or restaurants since the order came through. 

Non-essential medical and dental procedures have also been shut down, so I have not been to any doctors since February.  These services have to continue for only the most needed of procedures.  I’ve had to cancel a non-essential test I had scheduled. Early next month, I have to get my Baclofen pump refilled. That can’t be rescheduled, so that’ll be interesting!

The anxiety of when and how our country will open up and return to the normal is a daily concern of everyone.  It may never be like it was before.  People will be apprehensive, so large group gatherings in sporting events, theatres, restaurants, churches, shopping areas, concerts and the like will look different.  It is likely that this will be a slow process. 

I’m hopeful that the curve will begin to turn downward and we start to open up for business as a country soon.  Until then, stay safe and healthy!

***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.  

The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) at ACL has opened a new funding opportunity for a Disability and Rehabilitation Research Projects (DRRP) on Assistive Technology to Promote Independence and Community Living, and two Rehabilitation Research and Training Centers (RRTCs) on Employment of People Who Are Blind or Have Low Vision and Home & Community Base Services (HCBS) Outcomes Research & Measurement. 

The purpose of the DRRP program is to plan and conduct research, demonstration projects, training, and related activities (including international activities) to develop methods, procedures, and rehabilitation technology that maximize the full inclusion and integration into society, employment, independent living, family support, and economic and social self-sufficiency of individuals with disabilities.

DRRP on Assistive Technology to Promote Independence and Community Living: Under this particular DRRP priority, NIDILRR aims to sponsor research and development activities toward technologies that support community living and independent living of people with disabilities – particularly people who are aging with disabilities. With these DRRP grants, NIDILRR has a particular interest in funding research and development toward technologies that support people with disabilities in rural, frontier, or tribal communities.

View more details and application instructions.

Please visit the link above for more details about the grant opportunity and application process. This grant opportunity closes on May 26, 2020.

The purpose of the RRTC program, which are funded through the Disability and Rehabilitation Research Projects and Centers Program, is to achieve the goals of, and improve the effectiveness of, services authorized under the Rehabilitation Act through well-designed research, training, technical assistance, and dissemination activities in important topic areas as specified by NIDILRR. These activities are designed to benefit rehabilitation service providers, individuals with disabilities, family members, and other stakeholders. 

RRTC on Employment of People Who Are Blind or Have Low Vision: The purpose of this particular RRTC is to conduct research, training, technical assistance, and related activities to generate new knowledge about the efficacy of programs and interventions designed to improve employment outcomes for individuals who are blind or have low vision.

View more details and application instructions.

Please visit the link above for more details about the grant opportunity and application process. This grant opportunity closes on June 1, 2020.

RRTC on Home and Community Based Services (HCBS) Outcomes Research and Measurement: The RRTC grant made under this priority will conduct research and related activities that will lead to improved quality of home and community based services (HCBS) for people with disabilities. The grantee will work closely with the Administration for Community Living and NIDILRR to continue the development of HCBS quality measures that emphasize the importance of community living outcomes among HCBS beneficiaries. The grantee will also conduct research to generate new knowledge that can be used to improve the quality and efficacy of HCBS.

View more details and application instructions.

Please visit the link above for more details about the grant opportunity and application process. This grant opportunity closes on June 1, 2020.

Meet Mary Clare.  She’s a life- long Wisconsinite, from the south-eastern part of the state.  She has worked as an advocate for individuals with disabilities for most of her career.  She has seen self-determination grow for people in our state over the years and looks for this trend to continue upward.  We’re so fortunate to have her as a member of the Network! 

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

Mary Clare loves telling stories but struggles when asked to talk about herself. She has lived in Wisconsin her whole life. She grew up in rural Kenosha County, moved to Milwaukee to attend Marquette University and then made Milwaukee her home ever since. She has worked in disability advocacy, person-centered planning and grassroots community building for most of her adult working career. She feels blessed to have had many amazing teachers along the way like John and Connie O’Brien, Beth Mount, Pat Beeman, Herb Lovett, and Cindy Bentley to name just a few. She also loves connecting people, resources and ideas.  She has been doing this work around Wisconsin for a very long time. She loves what she does and still finds that she is learning something new everyday along the way.

In the spirit of self-determination, she is going to share something with you and all the readers that she has not shared widely before, She says. “I am a person who has struggled with mental health for much of my adult life. Self-Determination then is not only something that I feel passionately about in my work, it’s something I need to own personally.” 

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

Mary Clare believes that self-determination needs to be at the heart of everything we do in long term care in Wisconsin. She feels that being involved in the Self-Determination Network is a great way to stay ‘heart-centered’. She has been involved with People First Wisconsin since it’s founding in 1999, first as a staff person and now as an ally. In her current position at My Choice Family Care Wisconsin, which is an MCO, she works to connect their members with opportunities and resources to help them explore self-determination. 

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

Mary Clare explains that there is lots to be excited about when it comes to self-determination in Wisconsin.  She just mentions three ideas for our readers here:

1. Mary Clare explains, “The recent development of the Self-Determination Channel on YouTube is her first bit of exciting news.”  She loves it and is a big fan!
2. Secondly she loves watching established self-advocacy leaders like Cindy Bentley mentoring and passing the leadership baton to younger leaders like Ashley Mathy.
3. Finally, she sees self-determination moving ever closer to becoming the ‘default setting’ of everything people are trying to do in Wisconsin.   She feels that we are starting to see people with disabilities no only be welcomed to the planning table, but often taking their rightful place at the head of the table.  

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

Mary Clare shares that, “Everyone has gifts. Everyone has something to contribute and offer. Everyone has things they care about deeply that motivate them to act.” She wants you to discover what your unique gifts are. She indicates that if you are not sure where to start, ask some one you trust to help you with your discovery process. Be bold and put those gifts into action! It will not only help you to live a more self-determined life, it will help build community and encourage others to live a more self-determined life as well. 

What are some of your hobbies?

Mary Clare loves exploring art of all kinds but is especially passionate about her digital photography.  She enjoys walking and hiking. She also loves thrift shopping and up-cycling. She explains that up-cycling is the art of creative reuse where you transform old, discarded and unwanted items into something new, useful, and beautiful.

***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.

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. It costs a lot of money to design and certify an airplane seat, so the company is raising money to do this. The hope is to get planes flying within 18 months. 

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