News

The Administration for Community Living is seeking input from stakeholders including academic and research universities, area agencies on aging (AAAs), State Units on Aging (SUAs), Aging and Disability Resource Centers, Centers on Independent Living, and non-profit organizations on assessing changes in cognitive health among homebound older adults. Cognitive health – which falls under the broad, umbrella term of brain health – refers to a person’s capacity to “remember, learn, plan, concentrate, and maintain a clear, active mind” [1]. Homebound older adults – when compared to non-homebound older adults – exhibit greater declines and may experience declines in cognitive health that can affect their quality of life and functional independence.

 

We are seeking input and responses to the following list of questions:

  1. What are the characteristics of older adults for whom you conduct cognitive screening tests?
  2. What screening test and/or (psychometric) instruments (e.g. tests of recall, attention, processing speed, etc.) does your organization use to measure cognitive health?
  3. What is the length and format (e.g. in-person, paper-and-pencil, telephone, web-based, tablet, smartphone, etc.) used to administer these screening tests and/or instruments to the population of older adults you test?;
  4. What is the frequency with which your organization administers these tests and/or instruments and the duration over which cognitive health is monitored?;
  5. What is your estimate of the general cost per person for administering the test or instrument?
  6. What happens when changes are detected in a person’s cognitive health and how is this information used?; and
  7. What are the intended health outcomes (e.g., screening for a research study, early identification and detection, improvement through exposure to new interventions, reductions in re-hospitalization, etc.) sought from monitoring cognitive health over a period of time?

Purpose:

The purpose of this Request for Information (RFI) is to gain feedback and input on existing efforts to monitor status changes to cognitive health in the homebound older adult population from individuals or groups including – but not limited to – those in the academic and research communities, Area Agencies on Aging (AAAs), State Units on Aging (SUAs), Aging and Disability Resource Centers, Centers for Independent Living, and nonprofit organizations among others.

This RFI is for information and planning purposes only and should not be construed as a solicitation or as an obligation on the part of the federal government or the Administration for Community Living. ACL does not intend to make any awards based on response to this RFI or to otherwise pay for the preparation of any information submitted to or for the government’s use of such information.

Background:

According to cross-sectional data collected in 2011 by the National Health and Aging Trends Study, approximately 2 million (5.59 percent) of the older adult Medicare population were completely or mostly homebound [2]. A number of studies comparing the health profiles of homebound older adults – as compared to non-homebound older adults – consistently report that homebound older adults tend to be older in age, have multiple chronic conditions, and more frequently use healthcare services including emergency department visits [3].

 

Underscoring the potential importance of tracking cognitive health among the homebound older adult population is recent evidence finding that self-reported memory difficulties are a strong predictor of the homebound status of older adults [3] and evidence that screening tools and measures may prove useful in identifying those who may be experiencing cognitive decline or dementia despite not having a diagnosis [4].

What We Hope to Learn From this Invitation:

ACL is issuing this RFI to obtain input on existing efforts to monitor status changes in cognition in the homebound older adult population. This information will help ACL better understand what services, supports, and innovations are needed to inform interventions and/or policies to address declines in cognitive health that occur over time in the homebound older adult population.

References:

Addresses:

Comments should be submitted electronically to Dr. Vijeth Iyengar (vijeth.iyengar@acl.hhs.gov) with “RFI-Cognitive Health Status Changes Homebound Older Adults” in the subject line.

For Further Information Contact

Dr. Vijeth Iyengar (vijeth.iyengar@acl.hhs.gov) with “RFI-Cognitive Health Status Changes Homebound Older Adults” in the subject line.

It would be helpful to this RFI and ACL if you could structure your response in the following way:

  • Name of respondent
  • Preferred contact email
  • Organizational affiliation(s)
  • Response to questions in the order they appear in the summary section of this RFI

Comment Due Date:

To be assured consideration, comments must be received by 5 pm EST on September 20, 2019.

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Three U.S. Senators have introduced “The Exercise and Fitness For All Act” to improve access to fitness equipment and classes for people with disabilities.  The bill would promote the provision of exercise or fitness equipment, and exercise or fitness classes and instruction, that are accessible to individuals with disabilities.  It would have guidelines and regulations for fitness service providers specifying the accessible equipment and classes necessary to  ensure that people with disabilities can obtain the benefits  of physical activity and  fully participate in the services offered by the fitness provider.  

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The Department of Health Services has been granted an extension which pushes the Electronic Visit  Verification (EVV) implementation date back into 2020. The federal law would have gone into effect January 1, 2020, requiring all personal care and supportive home care workers to verify their time/location through an electronic system (smart phone, etc.).  

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For the third time this year, additional funding will keep alive a federal program that moves individuals with disabilities from institutions into the community.  Legislation signed this month allots another $122.5 million for Money Follows the Person which is a Medicaid program provides states with funding to pay for employment supports, housing and other services so that people with disabilities can transition from nursing homes and other institutional facilities to homes in the community.  The latest action will keep the program running through the end of this year, but advocates say it's operating at a  minimum level.

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The U.S. Access Board has released for public comment advisory guidelines for wheelchairs used on commercial passenger aircraft during flight. These onboard wheelchairs are provided by air carriers as a means of facilitating the transfer of passengers with disabilities to aircraft lavatories since personal wheelchairs cannot be used in the cabin. The Department of Transportation (DOT) has expressed its intention to supplement its regulations under the Air Carrier Access Act (ACAA) to include performance standards for onboard wheelchairs on covered aircraft. The Board is developing these non-binding guidelines as technical assistance to air carriers and manufacturers of onboard wheelchairs by providing an example of how to meet DOT's planned performance standards.

As indicated in a https://www.federalregister.gov/documents/2019/08/20/2019-17873/advisory-guidelines-for-aircraft-onboard-wheelchairs">notice published in the Federal Register, the guidelines specify dimensions, features, and capabilities for onboard wheelchairs that will allow passengers with disabilities to be more safely and comfortably transported aboard airplanes in flight. In addition, the guidelines include criteria to allow the onboard wheelchair to fully enter the lavatory in a backward orientation and be positioned over a closed toilet, and for the lavatory door to be closed. This feature would afford those passengers who cannot independently transfer to the toilet to have privacy in performing non-toileting tasks related to personal hygiene or medical needs. The Board has posed a number of questions to the public about specific provisions in the guidelines but welcomes input on all portions of the document.

As part of a negotiated https://www.transportation.gov/sites/dot.gov/files/docs/ACCESS%20Committee%20Final%20Resolution.11.21.16.pdf">rulemaking to improve access for air travelers with disabilities, DOT has put forth plans to supplement its ACAA regulations and require onboard wheelchairs with enhanced functionality on aircraft with more than 125 passenger seats.

Related information, including instructions for submitting comments, is posted at https://www.regulations.gov/docket?D=ATBCB-2019-0002" target="_blank" rel="noreferrer noopener">www.regulations.gov (Docket ATBCB-2019-0002). Comments are due October 21, 2019. In addition, on September 12, 2019, the Board will hold a public hearing that will provide an opportunity to submit comments either in person or by phone. Further details will be posted on the Board's website at https://www.access-board.gov/onboard" target="_blank" rel="noreferrer noopener">www.access-board.gov/onboard. Those who wish to provide testimony at the hearing should contact Rose Marie Bunales at (202) 272-0006 (voice) or bunales@access-board.gov by September 5, 2019.

For further details on the guidelines or the public hearing, contact Wendy Marshall at (202) 272-0043 (voice) or marshall@access-board.gov, or Mario Damiani at (202) 272-0050 (voice) or damiani@access-board.gov.

Public Hearing on Advisory Guidelines for Aircraft Onboard Wheelchairs  
September 12, 2019, 9:30 - 4:00 (ET)
Remote attendance options will be posted at: https://www.access-board.gov/onboard" target="_blank" rel="noreferrer noopener">www.access-board.gov/onboard
Access Board Conference Center 
1331 F Street, NW, Suite 800
Washington, D.C. 

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96 Self-Determination Network News:

August 2019

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Register Today!

The 2019 Self-Determination Conference will take place October 14th-16th at the Kalahari Resort in Wisconsin Dells.  The Conference empowers people with disabilities in Wisconsin to have more control over their lives. Technology is constantly evolving and so is the Self-Determination Conference. Join us as we learn ways to live healthier, happier and more productive lives.  Registration closes September 27th.  Register today!

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!  A Diehard is an individual who has made a significant contribution to the advocacy work here in Wisconsin. A diehard is someone with a steadfast commitment to the principles of community integration and self-determination. Diehards go above and beyond to make sure everyone is counted.  Nominations are due by 12p.m. on September 5th.  Nominate someone today!

 

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“Scotland Reports” from Lynn Breedlove

In early August, Lynn Breedlove represented In Control Wisconsin at an International Disability Congress in Glasgow, Scotland. He presented highlights of his paper entitled “Self-Direction Worldwide: Contrasting Beliefs and Their Impact on Practice” and attended several workshops focused on self-direction. He was the U.S. representative in a half-day brainstorm with self-direction advocates from 9 countries focused on the current state of self-direction around the world.  He is writing a series of articles for the SD Network about what he learned.  Today, we are pleased to share the first in his series.  Join the conversation: Please share comments, and thoughts with one another using the network. 

Read Scotland Report #1

Read a summary of “Self-Direction Worldwide”, with a link to the full paper

128

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.

For August, we shine the spotlight on Lydia. This college senior is determined not to let anything stop her from achieving her goals!  She believes it’s so important to advocate and show the world what people with disabilities can do. Stop by this month's Member Spotlight to get to know Lydia.

128 Stacy’s Journal

"The events of the last month have been a whirlwind. I find myself trying to find a sweet spot between wanting to do all I can to advocate for people with all disabilities, but yet wanting to be as socially “normal” as I can. At times, it’s challenging to find the right balance, but I wouldn’t trade either for the world."

In this month's entry, Stacy talks about trying to balance being a strong advocate and wanting to lead a "normal" life as possible.  We encourage you to share your thoughts and experiences as well.

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

  • Family Caregiver Characteristics: The Administration for Community Living released a data profile using data from the Caregiver Outcome Evaluation Study of the National Family Caregiver Support Program which examines characteristics of caregivers including age, relationship to care recipient, level of caregiving intensity, and use of NFCSP services.  Find out what the study found.
  • State Budget Impact:  The state budget passed by the legislature and approved by the Governor will fund state programs for the next two years. Read the Survival Coalition's summary.
  • Inclusive Emojis: An updated collection of emojis intended to be more inclusive and diverse was released.  Learn what new things are included.
  • Housing Assistance Funding: Federal officials announced that they plan to set aside millions of dollars to help people with disabilities access housing in the community. Find out what the funding Will help with.
  • Accessible Homes:  For people with disabilities, house  hunting can be very frustrating. Read about the push to make all homes more accessible.
  • Employment First Partner Grants:  The Wisconsin Board for People with Developmental Disabilities is seeking up to eight organizations to engage in community outreach activities that lead to increased community, integrated employment for people with intellectual and developmental disabilities. Applications are due August 30th.
  • Self-Advocate Leaders Needed:  People First Wisconsin is seeking applications from eight people with intellectual/developmental disabilities to become Self-Advocate Leaders for the Wisconsin Board for People with Developmental Disabilities’ Model Approaches to Living Well grant project. Learn more and apply today! 
  • Partners in Policymaking:  Wisconsin Partners in Policymaking is a six‐session advocacy and systems change training program designed to develop a group of 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 Fall are due September 1st.
  • New MCOs for Family Care: The Wisconsin Department of Health Services recently announced New managed care organizations (MCOs) have been selected to provide the Family Care program in some counties in Wisconsin beginning next year.  Learn about the change.
  • PIP and YiPPE Trainings: Transition Parents in Partnership (PIP) and Youth in Partnership with Parents for Empowerment (YiPPE) Trainings for 2020-2021 are now open for registration. Find out more about these great programs and register today! 

128 Upcoming Events

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

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. 

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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.

 

Scotland Report #1 from Lynn Breedlove


By SD Network, 2019-08-13

Scotland Report #1: An International Brainstorming Session of Self-Direction Advocates

-Lynn Breedlove

On August 8, I participated in a half-day brainstorm of 23 self-direction (SD) advocates from 9 countries. It was the first time I’d ever been part of a conversation about what’s happening in self-direction around the world.  I began to get a sense of the potential for a Global Self-Direction Community. Here are a few takeaways:

Insights re Specific Countries

North America

  • Ontario, Canada: Ontario is just beginning to scratch the surface of self-direction (“we have a long way to go”); not much SD activity in other Canadian provinces

Europe

  • Scotland: A lot of local control in Scotland: 31 different implementation mechanisms for self-direction (and they’re not always consistent with Scotland’s progressive SD legislation)
  • England: People self-directing in England experienced a 40% cut in funding during the last two years - that led to a lot of disillusionment about self-direction
  • Republic of Ireland: There is only one person with I/DD self-directing in the Republic of Ireland (he and his dad were at the meeting), but a new pilot for 150 people is in the works
  • Northern Ireland: In Northern Ireland, the initial self-direction pilot started out well, but then various local authorities turned it into their own distorted versions of self-direction - that’s been discouraging

Asia

  • India: Self-direction is informal in India - it basically involves giving local people a little money and some space to organize, create, and innovate

Australia

In Australia, the enabling legislation in the NDIS (National Disability Insurance Scheme) sounds very progressive but they tried to grow from zero to 460,000 people nationwide in two years - that was way too ambitious and there are lots of implementation problems

Worldwide Key Issues, Concerns and Questions raised by the Group

  • People with disabilities are at risk of having “our lives outsourced to government”
  • The “self-direction brand” is at risk of being corrupted
  • “Paid services should always be supplementary and complementary, and not the meaning of life”
  • “If you do the right thing and do it well, you will almost certainly increase cost-effectiveness”
  • How can we stay true to the spirit/essence of self-direction?
  • How can citizens hold government accountable for doing self-direction right?
  • We need to beware of “neoliberalism” (a tendency to assume free-market capitalism will solve everything)*

__________________________
*in the context of self-direction, I took this to mean that it would be a mistake to assume that all the supports and services people might need will automatically be available in the marketplace - this is especially a problem in rural areas

Member Spotlight: Lydia Dawley


By SD Network, 2019-08-11

67747890_2498566557040546_564841607342325760_n.jpgMeet Lydia.  This college senior is determined not to let anything stop her from achieving her goals!  She has done all sorts of amazing things with assistive technology and hopes to help students with disabilities discover how it can help them.  She believes it’s so important to advocate and show the world what people with disabilities can do.  We’re so fortunate to have Lydia as a member on the Network.

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

Lydia is a 22 years old senior at University of Wisconsin-Whitewater. Her major is Liberal Studies with special interest in Communication Sciences and Disorders and Special Education. She hopes to be an assistive technology specialist. She wants to figure out what and how students can use technology. Her goal is to have a clinic where there would be an assistive technology specialist, occupational therapist, speech-language therapist, and physical therapist. She explains that she wants to have a place for people with disabilities to go and get resources where everyone is on the same page.

Lydia is from Decorah, Iowa which is 3 1/2 hours away from Whitewater. She graduated from high school in 2015, and she was the first high school student in Iowa to participate in individual and large group speech competition who used an augmentative communication device. Since her junior year in high school, she has been an ambassador for Prentke Romich Company. She explains that they have communication devices and apps, and she goes around the Midwest to conferences talking about her experiences and about the app LAMP Words For Life.

This summer, Lydia is an intern at Access to Independence in Madison where she helped with the peer support program. Now, she helps teach classes at colleges about what resources there are in college for people with disabilities.

How are you involved with self-determination? 

When Lydia lived in Iowa, she spoke at events to help inspire others to advocate for themselves. “I think that is important” she says.

Why did you join the SD Network?

 Lydia explains that she believes it’s important to advocate and to bring awareness to the world, so that people with disabilities can be seen as people first and allowed the same opportunities as everyone else. 

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

Since she’s planning to graduate from Whitewater in May, Lydia is applying for grad school at UW-Stout for Rehabilitation Counseling Program, and she explains how it’s kind of stressful because she has to pull all of the items they need. She’s also applying for an Assistive Technology Certificate at the University of Illinois in Chicago; she wants to have enough creditability to work with people with disabilities because she’s afraid that parents won’t want their kids to see her.

Lydia is also excited that she recently got a job offer from Control Bionics to be a freelance writer for them. She’ll start writing about clients that use their device. She explains that the device is a patch that can be placed anywhere on the body and when the muscle contracts, it clicks on the device with the scanner feature.

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

Lydia encourages people to not be afraid to “beat to your own drum” and ignore the people who say that you can’t. “I can’t tell you how many times people said I couldn’t do something, and I just ignore them because I know that they don’t know me. I know myself so if they don’t want to help me, it’s okay,” she explains. 

What are your hobbies?

“I guess I don’t have any hobbies, I’m just a “typical” college kid,” Lydia jokes. She says she’s on social media all the time, and she likes to binge watch things on Hulu and Netflix. She points out that when she’s in school, she’s too busy with homework or work to do anything.

 

***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.

Stacy's Journal: Somewhere In Between


By SD Network, 2019-08-10

Ever find yourself wondering which side you’re on?  Whether it’s a game where your two favorite teams, deciding between two colors of paint for a home remodel project, determining which political candidate is best, or something as simple as deciding between your two favorite foods, everybody has had to make decisions that they’re uncertain of.  Often, there isn’t a right or wrong decision; but what we decide usually has a (positive or negative) impact.  When we are trying to decide on something, we sometimes have that feeling of uncertainty.  Should I be doing this?  Is this right for me?  What if I chose something different?  That feeling of uncertainty is something we all face on a daily basis and it’s not a bad thing.  Often times, we feel “on the fence” about the decisions we make which sometimes makes us questions things.  When we are “on the fence” about something, we don’t know how to feel about whatever it is.

In past entries, I’ve explained how unless I’m in situations that presents itself, I normally don’t think of myself of having a disability.  No, I’m not ashamed of it; it’s just not something I focus on.  It wasn’t really until after college that I learned the world of disability advocacy existed to the extent it does.  My first job of being an online mentor for students with disabilities really led me into the advocacy world.  Especially after college, I quickly learned that it was something I wanted to get involved in.  Advocating has opened many doors for me and I’ve found my purpose.  I truly love it!

Having said that, though, I often still find myself struggling to find a happy medium.  I feel like I’m somewhere in between most of the time.  I have many friends with disabilities.  It’s interesting to me that most are either completely involved in disability advocacy or they aren’t at all.  I know very few who are in between like myself.

The past month or so has been a great example of this conundrum.  I was gone three weekends in a row in late July and early August.  I had multiple events going on each weekend and my parents arranged their schedule to accommodate me.  The first weekend I met three of my friends from college for lunch and shopping in Milwaukee.  It’s something that I look forward to every year because it’s the only time we all get together.  One of my friends now lives in a different country and she and her family only come back once a year.  We always make sure we get together when she’s home.  These three girls were caregivers for me at UW-Whitewater and the four of us became really close friends. 

The second weekend was when I really felt mixed emotions.  I told my mom I felt like it was a weekend of two extremes.  Saturday, my mom and I were at Disability Pride Fest in Madison literally all day long.  I’m part of a group that’s creating to YouTube channel about people with disabilities and we taped some videos at the festival.  It was a long day, but I had a blast.   Again, I guess I’m used to sticking out, so when I’m around people with all types of different abilities, it’s a unique feeling.  I loved blending in with the crowd and not being stared at or judged If my muscles spasmed or if my tongue accidentally stuck out.  There are very few places where I don’t stick out.  As I’ve explained in other entries, since my disability is very apparent, when I’m at something like that, I automatically feel the need to prove my intelligence.  Please understand that by saying that, I’m in no way trying to belittle people who have intellectual disabilities; it’s just that when you’re nonverbal and use a wheelchair, people unfortunately make assumptions.  The more events I attend, the more comfortable I get.  I truly love being an active member of the disability community.

Sunday of that weekend I attended a gender reveal party for one of my best friends from grade school.  When I got the Facebook invite, I had to take a second to just breathe.  I knew I had to attend because love my friend and wouldn’t miss it for the world, but I also knew it’d be selfishly emotional for me.  As happy as I am for my friend, I just want those exciting life moments for myself.  Knowing I’ll never likely experience those life-changing moments can be a hard pill to swallow.  However, I knew I couldn’t let it stop me from going and supporting my friends.  Mom and I went and it was a great time. Their family and friends know me and are very accepting.  I caught up with another friend and her family too which was very nice.  When they did the reveal, I had to take a couple seconds to compose myself, but then I was fine.  I’m so happy for her and her family, and I’m incredibly blessed to have friends who continue to go out of their way to include me in their life—it truly means the world to me!

The last weekend my parents and I drove all the way up to Superior where I had a two-day Independent Living Council meeting.  The Council rotates meeting at the eight Independent Living Centers across Wisconsin.  I’ve been on the Council for about two years now, and I finally feel like I understand what it’s about.  I’m becoming more and more active on it.

One of the weekends, my mom and I were talking and I said, “man, I’ve taken us on quite a journey, haven’t I?” She chuckled and agreed.  The events of the last month have been a whirlwind.   I find myself trying to find a sweet spot between wanting to do all I can to advocate for people with all disabilities, but yet wanting to be as socially “normal” as I can.  At times, it’s challenging to find the right balance, but I wouldn’t trade either for the world. 

***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.

PIP and YiPPE Trainings 2019-2020


By SD Network, 2019-08-09

2019-2020 Training Opportunities for Families of Youth with Disabilities 

What is a Transition Parents in Partnership?Transition Parents in Partnership (PIP) is an opportunity for families to learn about the transition process for their youth with disabilities ages 14-21 in the areas of employment, education, living and health.
Why Should I attend a Transition PIP?

  • Learn about planning for life after high school
  • Learn about valuable resources and adult services
  • Become part of a network of parents who have youth with disabilities
  • Explore ways to share the information I have learned
  • Strengthen partnerships between the many professionals I interact with on behalf of my child

 For more information about PIP and for the locations and dates for the 2019-2020 PIP trainings visit: https://wspei.org/families/pip.php 

What is Youth in Partnership with Parents for Empowerment?Youth in Partnership with Parents for Empowerment (YiPPE) is an opportunity for youth with disabilities (ages 14-21) and their parents to learn about the transition process in a unique way while building real life skills in the areas of employment, education, living and health. Why Should I attend YiPPE?

  • Learn about planning for life after high school 
  • Learn about valuable resources and adult services
  • Become part of a network of parents who have youth with disabilities
  • Explore ways to share the information I have learned
  • Strengthen partnerships between the many professionals I interact with on behalf of my child

 Why Should my Youth Attend YiPPE?

  • Learn how to make decisions for themselves
  • Get involved in their school and community
  • Learn how to speak for themselves
  • Prepare for college and/or work
  • Meet other youth

 For more information about YiPPE and for the locations and dates for the 2019-2020 YiPPE trainings visit:www.wspei.org/families/yippe.php
If I’m Interested in either of these trainings, what do I do next?

  • To register for a YiPPE training, contact Sherry Gundlach 920-896-1003.
  • To register for the Fennimore Transition PIP training, contact Kari Todryk 608-745-5421.

 All trainings are FREE of charge to families.  Overnights, meals, and resources are paid for with a DPI IDEA Discretionary Grant.
*To learn more about WSPEI please click here to visit the website*

Watch a video to learn more about YiPPE!

Click here for video

 

Watch a video to learn more about PIP!

Click here for video

 

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