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Self-Determination Network News:

July 2021

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Registration Opens August 2nd!

The 2021 Self-Determination Conference will be October 18-20. As the COVID variants continue to be monitored, plans are being made to offer three options how people can safely participate in the conference. 

1. At the Kalahari! If you have been fully vaccinated and are comfortable with large in-door gatherings, join us at the Kalahari.
2. At one of the local Watch Parties around the state. If you have been fully vaccinated and are comfortable with smaller in-door gatherings, join others at a local watch party.
3. Join Virtually. If you are not comfortable with coming in person or have not been fully vaccinated, we are offering a virtual option.

Calling Microbusiness Owners

Business owners who have disabilities are encouraged to apply to sell their products/services/art at the conference. People will also have the opportunity to sell online all year long. Applications are due September 1.

Exhibitor Applications Available 

Applications to be an exhibitor at the conference are now being accepted. Organizations that support self-determination and self-directed supports are encouraged to apply. Applications are due September 1.

Diehard Award Nominations

Do you know someone who goes above and beyond to improve community supports for individuals with disabilities?  Do they support self-determination?  Nominate them for a Diehard Award in one of the following two categories: Professional Advocate or Self-Advocate/Grassroots Advocate. Nominations are due September 1.

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 Kristi. This up-and-coming self-advocate has found her passion--disability advocacy. She has recently realized that her voice does matter and that she can make a difference in the world. Stop by this month's Member Spotlight to get to know Kristi. 

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:

• Ideas for Job Coaches and Workers with Disabilities
• Virginia and Wisconsin Self-Advocates Speak Up

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:

• Impact of the Pandemic: It's widely known that people with developmental and intellectual disabilities are at much higher risk of getting COVID and dying from it. Learn about what a study found about how COVID has impacted quality of life for people with disabilities. 
• Inclusion Employment Platform: The push for inclusion in the workplace has become more popular in recent years. Read about a professional and employment platform with a committed focus on flipping the conversation around.
• Budget Helps but not Enough: 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. Find out what advocates feel was missed. 
• Become a Leader: Wisconsin Partners in Policymaking is a six‐session advocacy and systems change training program that develops future leaders across the state who are able to work with legislators and communities on policies and initiatives that will support the full participation and inclusion of people with developmental disabilities in all aspects of life. Applications for the next class are due October 1. Find out more and apply today! 
• Prioritizing Inclusion in Film: Recently, a famous Hollywood studio committed to putting more people with disabilities on screen. Learn how one Hollywood studio is taking steps to increase inclusion of people with disabilities. 
• Ipads for Loan: WisTech, Wisconsin's Assistive Technology Act Program, now has iPads available for short term loan for up to 30 days. Find out how the program works. 
• Paralympics May Help Boost Inclusion: Many experts think that this summer's Paralympic Games are an opportunity for businesses to embrace an underrepresented segment of the workforce and help with the global coronavirus recovery. Read about why advocates feel the games will spotlight the need for inclusion. 
• Public Comment on Statewide Transition Plan: The Wisconsin Department of Health Services opened a 30-day public comment period on its updated statewide transition plan to be submitted for final approval to the Centers for Medicare & Medicaid Service.  The public comment period closes July 26.
• Great Resources: Throughout the COVID-19 pandemic, the federal government has provided a range of programs to support individuals, families, and communities. Check them out! 
• Executive Order: Recently, President Biden signed an Executive Order to advance diversity, equity, inclusion, and accessibility (DEIA) in the Federal workforce. Learn what the order confirms. 
• Boost to Disability Services: Although, President Biden's effort to get eliminate waiting lists for people with disabilities by getting more funds into Medicaid and home-and-community-based services has halted at the moment, it appears the plan may soon get new life. Find out why advocates think an increase in funding will be coming soon. 
• Travel Website: The world is opening up again and that means people are beginning to travel. The International Transport Forum and the Federation Internationale de l' Automobile recently launched a new website that has information on facilities and options for people with disabilities traveling by car. Read about what kind of information the website provides. 
• Rise in Employment: According to the June jobs report, there were big rises in employment for people with and without disabilities. Find out how much it increased. 
• Celebrity Case Calls Attention to Questions on Guardianship: Recently, due to the attention from the Britney Spears case, debate over Guardianship has been highlighted. While legal oversight arrangements are needed as protection for some, many disability advocates question the need for them in many cases.  Learn about why many people feel guardianship is too widely used for people with disabilities. 

Upcoming Events

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

• Webinar: ADA Anniversary Update: July 20, 1p.m. to 2:30p.m.,Online
• EngAGED Virtual Social Engagement Summit: July 22, 11:45a.m. to 1:15p.m., Online 
• Webinar: New Approaches To Web Accessibility Requirements Under WCAG3: July 27, 12p.m. to 1:30p.m., Online
• Webinar: Accessible Pedestrian Trails And Shared Use Paths: August 5, 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.

Meet Kristi. This up-and-coming self-advocate has found her passion--disability advocacy. She has recently realized that her voice does matter and that she can make a difference in the world. She encourages others to “just go for it!”  We’re so fortune to have her as a member of the Network!       

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

Kristi is 30 years old and was born with Spina Bifida.  Due to this, she is paralyzed from the waist down. “Even though going through all of the medical issues associated with Spina Bifida hasn’t been easy, I feel like it has made me a stronger person and really what led to my calling to become a self-advocate,” she says. She has started joining different advocacy groups and is a Self-Advocate Leader with the Board for People with Developmental Disabilities (BPDD). She’s passionate about making this world more accepting and accessible to people with all different abilities.  

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

While Kristi is new to the Self-Determination Network, she has been in a few videos for the Self-Determination YouTube channel.  She joined the SD Network because she saw a post on Facebook from a friend, asking if anyone would be interested in answering some questions for an upcoming Member Spotlight.  She jumped at the chance because she wanted to get out there and share opinions on disability related topics. “Again, I feel like bringing awareness to different abilities and helping individuals overcome the obstacles that may arise is my purpose in life.  Everyone has a story and I want to help people tell theirs from a position of power and strength rather than a position of pity and others feeling sorry for them,” she explains. She points out a quote from Dr. Seuss: “Why blend in when you were born to stand out?” 

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

The best thing happening for Kristi is that she’s building up her self-determination skills.  She explains that she’s gradually learning how to make her voice heard and that the value of what she has to say. She tells us, “before joining all of these self-advocate groups I was shy and reserved.  I didn’t really give my feelings or opinions because I felt like no one was listening to me anyway so why should I bother?” In terms of self-determination, she’s learning that she does matter and she has the right and responsibility to get her thoughts and feelings recognized. “I’ve become more aware of the thought that if I don’t share my story, thoughts, and feelings, who will?” she says.       

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

The advice that Kristi would give to others who are looking to become more self-determined is; even though it will be scary and you’ll have doubts, just go for it!  She explains that if you don’t like how something in your life is running, let someone know who can help you make the changes you want.  “Yes, you may not solve the issue or get the exact result you wanted, but you will make it known that you do have an opinion and need to be asked about different choices rather than having someone just make the choices for you.  It’s your life, live it how you think is best for you,” she exclaims!

What are some of your hobbies?

Kristi likes going out with friends and scrolling through Facebook.  She also enjoys attending a Pound fitness class on Tuesdays and Thursdays.

***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.

Recently, due to the attention from the Britney Spears case, debate over Guardianship has been highlighted. While legal oversight arrangements are needed as protection for some, many disability advocates question the need for them in many cases. Conservatorship or Guardianship arrangements are meant to support people who are incapable of making decisions on their own. While some feel it's a safety net, many feel that it's too widely used for people with disabilities. They are often permanent and misunderstood. Advocates feel supported decision-making is the best option. It has become more popular in recent years. 

Read more

According to the June jobs report, there were big rises in employment for people with and without disabilities. Indicators are showing numbers close to pre-pandemic levels as more people with disabilities are getting employed. In June 2021, among workers ages 16-64, the 5,046,000 workers with disabilities represented 3.5 percent of the total 142,462,000 workers in the U.S.

Read more

The world is opening up again and that means people are beginning to travel. The International Transport Forum and the Federation Internationale de l' Automobile recently launched a new website that has information on facilities and options for people with disabilities traveling by car. The site answers questions like :Am I allowed to drive here?,  Where can I park?, and Can I rent a car?  It's meant for international travelers. 

Read more

Although, President Biden's effort to get eliminate waiting lists for people with disabilities by getting more funds into Medicaid and home-and-community-based services has halted at the moment, it appears the plan may soon get new life. The plan was opposed because it didn't include infrastructure bill. Despite the setback, advocates expect the extra funds for home-and-community-based services will be included in the recollection bill that could be passed in the coming months. 

Read more

Whether it’s waiting for ticket sales to open for a concert for your favorite band, waiting for the clock to turn midnight to celebrate your birthday, or another scenario, almost everyone has experienced watching the clock to turn a specific time for one reason or another. When we have to wait until an exact time for something, time often goes by really slowly. Regardless of rather it’s for a good or bad thing, people get anxious about waiting. Often, the same feeling occurs when people are under a certain time limit to complete a task. One often feels pressure or anxiety when being timed to complete tasks. For people with disabilities who need assistance with basic needs, this feeling just got amplified thanks to a new federal mandate.

For years, the words “Electronic Visit Verification” (EVV) have been floating around the disability community. It’s basically where in-home caregivers have to log in and out for each shift. To the average person, this doesn’t sound like a big issue. Employees have to sign in and out at lot of jobs, right? What is the problem with that? Well, let me try to explain.

In long-term care programs, participants usually get a certain amount of care hours based on annual assessments. There are different types of care hours people qualify for—like Personal Care, Supportive Home Care, and Respite Care. I have Personal Care and Supportive Home Care. I have a certain number of each that I’m allotted weekly/monthly. Some people can just use the hours on whims notice. In my situation, it’s best to have a standing schedule of care. I have the different hours divided up each day and it usually doesn’t vary too much. I’ve been hiring and scheduling all of my own caregivers for over five years now, and I’m really glad I’ve done it this way all along--especially with this new mandate. If you don’t use the hours, you lose them. Generally, you want to use all the hours you can, so you don’t risk having your amount cut due to lack of use. I’ve learned it’s much more difficult to increase your hours than it is to have them cut back.

For the past five years, I’ve had certain scheduled shift times. My workers would enter the shifts into the portal, submit it at the end of each time period, and then I would approve it. Since my shift times stay the same, it worked pretty well--everyone knew exactly what to put. When I started hearing about EVV a few years ago, I knew it’d be a big hassle, and I was right.

My Fiscal Employment Agency (FEA) chose not to use the software application that the state came out with. Instead, they had to get the software that they were going to use approved by the state. The Department of Health sent out a large packet of information about their system back in November which caused mass confusion. I think all of the FEAs and IRIS consultants got bombarded with questions by anxious and confused participants. At the time, my FEA told us to not worry about it and more information would be coming. For months, I had been hearing people who have other FEAs starting to use EVV. I thought it was a little weird my FEA seemed to be so far behind, but I certainly wasn’t going to question it. In January, I started seeing advertisements to sign up for training through the FEA. I signed up for a session, but as it turned out, they were doing it over the phone (instead of on the computer) at the time, so I couldn’t participate. I had my mom do the training, so she could fill me in. At the time, their software system hadn’t been approved, so the training was pretty useless. In May, I started receiving emails saying to look for information about EVV coming soon. I told my workers to start watching their inboxes for information about it. A few weeks ago, some of my workers and I received an email about how to set it up, but some of my workers didn’t receive it. The email was very vague and didn’t have a start date. I assumed more information would be coming, so I didn’t start. About a week or so ago, I received an email from the FEA asking why there has been no shifts logged in the EVV system. I replied saying that only a couple of my workers received an email and there wasn’t a start date. That got the ball rolling. They asked for email addresses for the people who didn’t get it, and said we should start as soon as possible. They explained that it is a “soft launch” meaning that the time sheets will still be used for payment while the kinks get worked out of this new system. Eventually, though, this will replace timesheets.

With the new EVV system, workers download an app on their phone to sign in/out of every shift. If a worker doesn’t have a smart phone or doesn’t want to download the app, there are other options to log in/out (such as a number to call or even a device the participant can request to time in/out). Luckily, my workers are young and tech savvy, so using the app isn’t a big deal. However, it’s a real pain having to log in/out at an exact time. I’ve always had a pretty lenient relationship with my workers. If we got done with everything I need done a few minutes early, I’d let them leave and chart the full shift on the timesheet; on the flip side, if I needed a few minutes more of assistance, they’d stay, but only put the regular amount of time on the timesheet. That all came to a screeching halt when we started EVV.

I now have five alarms set on my phone each day. Each one is a reminder to sign in or out of a shift. My night shift is split into two separate types of care, so, now, at 5:30 each night, we have to stop what we’re doing and the worker has to sign out of one shift and into another. It is ridiculous! Typical people don’t live “on the clock,” but that’s essentially what this is making people in my circumstances have to do. It makes me so angry! I understand that it’s meant to prevent fraud, but it’s also not fair to the participants. I have to literally keep my eye on the on time 24/7 now. At least, for now, the app just asks people to check the tasks for each shift rather than having to select tasks for specific minutes in the shift. If that ever happens, it’s going to be even more of a chaotic mess. Fingers crossed that doesn’t happen!

Fortunately, I’m in the IRIS program, so I don’t have to worry about location. Unlike other long-term care programs, participants in IRIS can receive cares outside of my home. Thank goodness! For those who are in other programs can only receive personal care in their home. The app does track location, but, as long as I’m with the worker (obviously), location shouldn’t matter.  I consider myself fortunate in that aspect.

Most people don’t live life on the clock, but that’s what many people like myself are being forced to do. I think it’s obvious that I’m not happy about this new mandate, but it is what it is. I have no choice but to embrace this new system, and figure out what is going to work best for me. Is it fair that I’m on the clock all day everyday? Absolutely not, but the reality is life isn’t fair for anyone!

***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.

Apply by July 30, 2021

The National Center on Advancing Person-Centered Practices and Systems (NCAPPS) has opened a new application opportunity to provide technical assistance (TA) at no charge to selected states, territories, or tribes for up to 100 hours per year, for up to two years.

TA recipients will work with national subject matter experts to develop a TA plan and achieve the outcomes identified in that plan. The NCAPPS team at the Human Services Research Institute will coordinate and deliver TA, in collaboration with subject matter experts. For more information about the current NCAPPS TA cohort, including summaries of TA activities and products, visit the Technical Assistance page of the NCAPPS website.

The NCAPPS June webinar included four of the states from the first cohort of NCAPPS TA -- the event (recording here) showcased what those states had learned from their TA and how they plan to use those learnings to continue making their systems more person-centered.

The application is the first of two phases in applying for TA. Within two weeks of submission of this application, the NCAPPS team will contact applicants to finalize the TA request during a second phase. The second phase involves a videoconference between the NCAPPS team and the applicant to gather more information, explore intended outcomes in greater detail, and confirm that the applicant is in a position to effectively advance needed change

Recently, President Biden signed an Executive Order to advance diversity, equity, inclusion, and accessibility (DEIA) in the Federal workforce.The Order confirms that the country is at its strongest when public servants embrace the full diversity of all people. It will help develop Federal workforce where qualified people from all backgrounds have an equal opportunity to serve the country. 

Read Order

Throughout the COVID-19 pandemic, the federal government has provided a range of programs to support individuals, families, and communities. While some of these programs are long-standing, others were formed in direct response to the challenges created or exacerbated by the public health emergency. As we continue to move forward towards a “new normal,” the following resources remain available for those in need:

• The Emergency Broadband Benefit (EBB) is a temporary Federal Communications Commission (FCC) program to help families and households struggling to afford internet service during the COVID-19 pandemic by providing discounts on service and devices.
• The Emergency Rental Assistance (ERA) program from the Department of the Treasury assists families that are unable to pay rent or utilities so they can remain in their homes during the pandemic.
• The Low Income Home Energy Assistance Program (LIHEAP) from the Administration for Children and Families (ACF) provides federally funded assistance to cover home energy bills, energy crises, weatherization, and energy-related minor home repairs to eligible households.
• The Low Income Household Water Assistance Program (LIHWAP) from ACF is a new emergency program that provides funds to low-income households for water and wastewater bills, helps avoid water shut offs, and supports water system reconnections caused by missed payments during the pandemic.
• The Supplemental Nutrition Assistance Program (SNAP) from the U.S. Department of Agriculture (USDA) provides monthly benefits that help families purchase healthy food from authorized retail food stores.