News

The National Quality Forum (NQF) has announced that the Person-Centered Planning and Practice (PCP) Project final report is now available. NQF members and the public are able to access the final report through the project page.

This report documents the effort to address long-term services and supports (LTSS) that are predicated on a person’s needs, preferences, goals, and desires. The Department of Health and Human Services (HHS) in collaboration with its partners and other federal agencies, states, consumers and advocates, providers, and other stakeholders, convened to generate recommendations to:

• Refine the current definition(s) for Person-Centered Planning;
• Develop a set of core competencies for performing Person-Centered Planning facilitation;
• Make recommendations to HHS on systems characteristics that support person-centered thinking, planning, and practice;
• Develop a conceptual framework for Person-Centered Planning measurement; and
• Conduct an environmental scan including the historical development of person-centered planning in LTSS systems to include a research agenda for future Person-Centered Planning research.

These recommendations will support the continued creation of a sustainable system where older adults and people with disabilities have choice, control, and access to a full array of quality services that assure optimal outcomes including independence, good health, and quality of life.

The multi-stakeholder committee’s goal is to give government agencies and the public a view that finds agreement across different partners and perspectives. This project builds upon previous NQF work with the goal of providing states and other individuals and entities with the guidance they need to develop meaningful systems to support person-centered thinking, planning, and practices.

Please contact the project team with any questions.

Self-Determination Network News:

August 2020

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

Registration Open

Join us for one of the biggest events for people with disabilities and the people who support them. The 2020 Self-Determination Conference will be held virtually October 26th-28th. Learn how to live more independently, participate more in your community, and direct your public funds efficiently. Registration is free, but you have to register by October 1st. Register now!

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:

• ADA 30th Anniversary
• Challenges in These Crazy Times
• 2020 Self-Determination Conference

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 August, we're shining the spotlight on Evelyn. Being in the education field for 22 years, she has a wealth of knowledge about different types of services for people with disabilities. Stop this month's Member Spotlight to get to know Evelyn.

Who should we shine the spotlight on next?

Stacy’s Journal

"Making decisions and having choice is part of life. We make hundreds (or probably thousands) of choices on a daily basis. We learn from our choices—sometime we learn the hard way by making bad choices, but that’s ok because those choices we make that shape our life into what it is."

In this month's entry, Stacy talks about how being able to make choices is crucial in life. Have you had to make some life-changing choices?

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

• Be Inspired: A new coffee shop in Lake Geneva ran by people with disabilities found a way to open despite the pandemic. Find out how this unique shop works.
• Apple TV Show: Apple TV has a new show that stars people with visual impairments. Learn more about the show.
• Emergency Response Supports: To celebrate the 30th ADA Anniversary,  FEMA came up with 30 ways the agency supports emergency preparedness, response and recovery for people with disabilities. Check out the list.
• Electronic Visit Verification: The Wisconsin Department of Health Services has released updates that explain Electronic Visit Verification (EVV) policy and training. Learn the latest.
• Work-from-home Guidelines:  Working from home used to be a hard accommodation to get for people with disabilities and health conditions. However, the pandemic changed that. The Equal Employment Opportunity Commission recently released guidelines for accommodations during the pandemic. Read about these guidelines.
• Watch: In late July, we celebrated the 30th anniversary of the Americans with Disabilities Act (ADA). Watch this video to learn how the legislation changed the lives of people with disabilities and where there's room for improvement.
• Respite Grant Opportunity: Lifespan Respite Care programs are coordinated systems of accessible, community-based respite care services for family caregivers of children and adults of all ages. Learn about a grant opportunity for this program.
• ADA Brings Security During a Pandemic: The pandemic has caused upheaval in everyone's life. Read about how the situation would be much worse for people with disabilities without the Americans with Disabilities  Act.
• Equal Access to Medical Care: With the pandemic hitting the country hard, the topics of health care access has been front and center. Learn why many people feel it's time that health care systems be required to follow the non-discrimination laws to ensure that the medical system is accessible to everyone.
• More Needs to be Done: For Wisconsin Representative Jimmy Anderson, the Americans with Disabilities Act is personal. Find out what he thinks still needs to be done.  
• ADA Transformed the Country: The Americans with Disabilities Act  changed life for people with disabilities.  Read about the history of it and learn how it has impacted so many.
• Relief Proposal Concerns: As another COVID relief bill begins to form, disability advocates worry that people with disabilities are being ignored again. Find out why.
• Housing Trouble: Most people with disabilities in the United States have a hard time finding accessible housing. Learn why this is.
• Accessibility Features Make Life Easier: Apple interviewed four people with disabilities to show how Apple's built-in accessibility settings have made the lives of people with disabilities easier. Read about these neat features.
• Medicare Running Running Out: A new prediction suggests that a fund for Medicare that pays for hospitalizations and in-patient care may run out of money as early as 2022 or 2023. Find out why this is.
• Employment Data Spotlight: The U.S. Department of Labor’s Bureau of Labor Statistics released a report that highlights data products that can be used to help people with disabilities plan their career paths. Check it out!
• Caregiving Policy Proposal Survey Results: Earlier this summer, the Governor's Task Force on Caregiving conducted a survey about policy proposals. Take a look at this summary to see what it revealed.
• Impact of Self-Driving Cars: A study is being done of the impact of self-driving cars.  Read about why many people feel they will be life-changing for people with disabilities.    

Upcoming Events

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

• Webinar: COVID-19 And Return To Work: August 13th, 1p.m. to 2:30p.m., Online 
• BPDD Conversation Cafe: August 18th, 3p.m. to 4:30p.m., Online
• Webinar: Effective ACCESSIBLE Communications (Part 1): August 20th, 11a.m. to 12p.m., Online
• Webinar: Effective ACCESSIBLE Communications (Part 2): August 27th, 11a.m. to 12p.m., Online
• CitizenFest: September 14th to September 19th, 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.

A study is being done of the impact of self-driving cars on those with disabilities.  Many people feel they will be life-changing for people with disabilities.  This article details a lot of the advantages.

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Earlier this summer, the Governor's Task Force on Caregiving conducted a survey about policy proposals. 1507 people took the survey.   This is a summary of the results.

View summary

To mark the 30th anniversary of the Americans with Disabilities Act, the U.S. Department of Labor’s Bureau of Labor Statistics (BLS) released a "Spotlight on Statistics: Using BLS Data to Match People with Disabilities with Jobs." This Spotlight highlights BLS’s data products that can be used to help people with disabilities plan their career paths. 

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A fund for Medicare that pays for hospitalizations and in-patient care may run out of money as early as 2022 or 2023. A researcher at the Leonard Davis Institute of Health Economics at the University of Pennsylvania came up with this estimate. The trustees at Medicare have not adjusted their estimate from April. That estimate predicted that this fund would run out of money by 2026. This fund gets most of its money from a 1.45% tax paid by employees and employers. This is likely to happen sooner than people thought because millions of people are no longer working. This means that less money from the tax is going to this fund. It is not clear what would happen when Medicare runs out of this money.

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Apple interviewed four people with disabilities to show how Apple's built-in accessibility settings have made the lives of people with disabilities easier. Apple has a variety of accessibility settings built into their devices meant to help people with many different kinds of disabilities use them easily.

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Most people with disabilities in the United States have a hard time finding accessible housing. This is because of several reasons. First, there is not enough accessible housing. Secondly, much of the accessible housing that exists is in places like apartment buildings, especially those built during the 2000s. Finally, accessible housing, either newly built or with updated amenities, is more expensive. This makes it hard for people with disabilities to afford living in these more accessible housing options because people with disabilities usually have lower incomes.

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From a young age, most people are given choices and are encouraged to try new things.  To begin with, parents give children very basic choices such as the choice between juice and water.  As kids get older, they began to learn consequences and benefits of their choices.  Parents often encourage them to try new things and then help them make decisions.  Making decisions is a huge part of life.  As adults, our choices often have significant (both positive and negative) repercussions.  Some choices are very easy while others are almost impossible to make.  For all people, having choice is a critical part of life; for people with disabilities, having choice and being able to self-direct often comes with many obstacles.

I’ve been out of college over 11 years now, but each August, I find myself reflecting on one of the biggest decisions I’ve ever made.  It was a decision I made 17 years ago. At the time, I had no idea of how big of a decision it was.  I just had graduated high school and was preparing it to go off to college.  Sure, I had some extra things to get ready, but I was getting ready for college just like all of my friends were.  It didn’t hit me that I was about to take a huge leap of faith and move away and be on my own.  I was just doing the “normal” thing.  Now, I realize what a life-changing decision that was. I had no idea what I was getting myself into which, looking back, was probably a really good thing.  I know my parents—especially my dad—would have rather had me start out at UW-Fond du Lac, but, nevertheless, they supported and encouraged me to try it at UW-Whitewater.  It was the best decision I’ve ever made.  Yes, I’m very proud I earned my Bachelor of Arts degree, but, beyond that and perhaps more importantly, I proved to myself and others that I could live on my own.  Like I’ve said in past entries, this was a huge relief to my parents knowing I could physically manage (with the right supports) without them. I often wonder where I’d be today if I hadn’t taken that giant step.  Where would I be? Would I be living on my own?  Would I still be living with my parents? What would I be doing?  It’s honestly a scary thought.  There’s no doubt in my mind that that one decision has shaped and will continue to shape my life forever!

Most choices obviously aren’t as monumental.  Recently, I found myself wrestling with the decision whether or not to resign from one of the state disability councils I was on.  I had been on this particular council for three years, and while I enjoyed my time on it, I never really felt a real connection to the subject matter.  The role of this council was more about funding allocations and policy for a certain type of organizations which provide services for people with disabilities rather than actually creating change that directly improves lives.  I tried my best to learn and become interested in the council, but my interest just wasn’t there.  When I was appointed, I filled someone’s spot who left in the middle of their term and then I started my own term.  Originally, when it became clear that I wasn’t passionate about this, my plan was to finish out my two-year term and just not apply for a second term.  My term would have ended next July; however, the council began updating its policies and there was talk of having terms being three years each (instead of two).  That’s when I really started questioning whether I should resign.  It was hard because I’m friends with some of the council members and I knew they’d be disappointed, but I knew it was best to resign because I wasn’t fully invested in it.  I knew it wasn’t right to take up a spot on the council when I had these feelings, so ultimately, I decided to resign.  Those weren’t pleasant emails to send, but I feel it was the right decision.

Care is another area where having choice is crucial for many people with disabilities. When you rely on caregivers to help you live life, you have to have some choice about who comes into your home and when.  Although it’s often denied, some long-term-care programs don’t allow for much choice.  Some people with disabilities need assistance in  making decisions about finance and care; while others are capable of self-directing everything.  As you know from reading my past entries, I’m a participant of the IRIS Program which allows me to self-direct every aspect of my life.  Not only do I have choice of how to spend my budget, but I also can choose who works for me.  That’s a huge plus of being in IRIS.  When I had care agencies in the past, if I didn’t get along with a worker, I’d have to talk to management, and, unless it was an extreme safety situation, I’d have to deal with it and continue with the person.  Now, although I try my best to make things work and get along with my aides, I can choose to terminate a person if things just don’t work out.

Making decisions and having choice is part of life.  We make hundreds (or probably thousands) of choices on a daily basis.  We learn from our choices—sometime we learn the hard way by making bad choices, but that’s ok because those choices we make that shape our life into what it is.

***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.

As another COVID relief bill begins to form, disability advocates worry that people with disabilities are being ignored again.  The legislation, known as the HEALS Act, calls for another round of stimulus payments to individuals, liability protections for businesses and funding for schools, among other initiatives.  However, despite strong advocacy, it doesn't include any new funding for home-and community-based services or Medicaid.

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