News

It's no secret that advances in  technology have completely changed the world we live in.  People can do anything from make doctor appointments to get groceries or prepared meals delivered with just a click of a button.  While these  services were primarily designed for people on the go, there are benefits for older people and people with disabilities.  One of the biggest benefits is the potential to deliver important supports to people with mobility issues.  However, these services often come with some limitations.  This article discusses some of the benefits and risks of three services which include ride sharing, grocery delivery, and on-demand medical services.

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The  International Code Council recently released an update to 2009 ICC A117.1 Accessible and Usable Buildings and Facilities standard that provides greater accessibility to buildings for persons with physical disabilities and incorporates new elements of building design.  The ICC A117.1 standard helps achieve uniformity in the technical design criteria in building codes that allow a person with a physical disability to independently get to, enter and use a facility. The standard is intended for adoption by government agencies and organizations.

Learn what the new standards include

Public transportation notoriously causes difficulty and stress for people with disabilities. However, modern technology firms are working to change this. Uber, for example, has introduced the UberWAV app that allows users in New York City to request a wheelchair accessible vehicle, such as a Caravan or a Ford minibus. Their UberASSIST app trains drivers to accommodate assistive technologies, including scooters and wheelchairs.

Another company, Wayfindr, helps people with visual impairments navigate subway stations through use of audio technology. The CEO of Wayfindr has stressed the goal of inclusiveness and collaboration in developing the app, and thus the company worked to develop an open standard for this type of technology, which they hope would increase the development of other similar products.

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Even with the American with Disabilities Act (ADA) and federal legislation to protect the people  with disabilities, studies find that too many American citizens are restricted in where they can go or live due to lack of handicap-accessible accommodations.  Oftentimes, things such as sidewalks, office buildings, and public transportation are inaccessible. There are many interesting examples and statistics in this article.  Many people blame it on the  lack of  funding available.

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Louisiana recently launched its program for ABLE accounts (accounts that allow people with disabilities to have a savings account without jeopardizing their  benefits).  In Louisiana, the program is known as "LA ABLE." Accounts can be used for disability-related expenses that will increase and/or maintain a person's health, independence, or quality of life.  LA ABLE is available to people with disabilities nationwide.

Read about Louisiana's program 

Georgia recently launched its program for ABLE accounts (accounts that allow people with disabilities to have a savings account without jeopardizing their  benefits).  In Georgia, the program is known as "Georgia STABLE." Accounts can be used for disability-related expenses that will increase and/or maintain a person's health, independence, or quality of life.  Georgia STABLE is available to people with disabilities nationwide.

Read about Georgia's program 

Do you know a caregiver or team that deserves to be honored for the great work they do?

The Wisconsin Long-Term Care Workforce Alliance’s Annual Caregiver Awards are the only statewide recognition of these outstanding individuals and teams working tirelessly in all service locations.

 This is your chance to honor a dedicated individual or team. You can nominate caregivers in the following categories:

• Spotlight Individual Caregiver Awards (four awards)
• Caring Together Team Award (one team award)
• Heart of Family/Friend Caregiving Award (one award)

 (Please read the attached Alliance Caregiver Awards Brochure for criteria for each Award or visit us online at http://wiworkforcealliance.com)

How to Nominate a Caregiver
To nominate a caregiver, prepare the Nomination Form and an Essay of 200 words or less, sharing why you believe the person or team deserves the award in the selected category. You can submit the nomination in two ways:

1. Online Submission: You can complete the Nomination Form and Essay online at https://gwaar.wufoo.com/forms/q1cccgno018aain/
2. Mail/Email Submission: You can print and complete the Nomination Form in the Caregiver Awards Brochure, prepare the Essay in a Word document, and then email, mail or fax both to the contacts in the brochure. 

You must submit your nomination by August 18, 2016.

Announcement and Recognition of Caregiver Award Winners
Each award winner will receive a certificate, a monetary prize and an invitation to be our guest at the Alliance Caregiver Awards Ceremony and Luncheon on Thursday, September 22, 2017, at the Wintergreen Resort in the WI Dells. The event is co-hosted by the WI Personal Services Association. 

Thank You to the Sponsors of the 2017 Alliance Caregiver Awards!
We appreciate the support of our Sponsors around the state, who make it possible to recognize the Caregiver Award recipients.  There’s still time to become a sponsor for the 2017 Caregiver Awards – just complete the attached Sponsorship Form or contact us for more information.

 Hosting Sponsor

Wisconsin Personal Services Association

Sugar Maple Tree Sponsors

Kenosha County LTC Workforce Alliance

Society's Assets

Wisconsin Assisted Living Association

 Robin Sponsors

Consumer Direct Wisconsin

Dungarvin Wisconsin

 Wood Violet Sponsors

Community Living Alliance

Shared Purchasing Solutions

Caregiver Award Brochure 2017

Caregiver Award Sponsorship Form 2017

Please consider taking the survey yourself and share with your networks. We would like to collect a good sample to help direct future work.

The Wisconsin Board for People with Developmental Disabilities (BPDD) was established to advocate on behalf of individuals with intellectual and developmental disabilities, foster welcoming and inclusive communities, and improve the disability service system.  The Board is interested in learning more about the use of guardianship and supported decision making for adults with intellectual and developmental disabilities in Wisconsin. This survey is intended to gather information from a variety of stakeholders about their knowledge of and experience(s) with Wisconsin's adult guardianship system and children transitioning into adulthood to assist BPDD in better understanding which issues should be prioritized for short-term and long-term planning and action. All responses and/or personal information provided will remain confidential. The survey should take 12-14 minutes to complete. Thanks you for your assistance with this important project.

PLEASE use the link below to take a quick survey about Guardianship alternatives in Wisconsin. Your input is important to us. Feel Free to share this survey with your networks as you deem appropriate.

https://www.surveymonkey.com/r/YHWCJTQ

We will continue to collect survey responses through August 1, 2017.

 Self-Determination Network News:

June 2017

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

2017 Disability Pride Fest

The 5^th annual Disability Pride Festival will be held on Saturday July 29th from 12p.m. to 5p.m. at Tenney Park in Madison, near where the Yahara River empties into Lake Mendota. Each year, the festival brings together artists, performers, advocates, and organizations to celebrate the contributions made by people with disabilities to the local community. Well-known local talent such as Tara Ayres, Tani Diakite and the Afrofunkstars, First Wave performers Lewis Elder, and others have graced the stage in previous years. This year, Gaelynn Lea, winner of NPR’s Tiny Desk Competition, is coming back.  New groups of performers will be joining the fun as well.  Visit the website for more information!

Changes to Medicaid and the AHCA

Members of the U.S. Senate are working behind closed doors on their own version of American Health Care Act (AHCA).  The U.S. Senate is preparing to vote on the AHCA within the next two weeks. There is a lot at stake for Wisconsin in this vote. The AHCA cuts federal Medicaid funding by 25% over 10 years and eliminates key health care protections for children and adults with disabilities. Estimates indicate Wisconsin could lose $1 billion in funding and put many essential programs and supports for children/adults with disabilities and seniors at risk.

There have been no public hearings held on these major proposed changes. These significant cuts to Medicaid mean cuts to Wisconsin programs like Family Care, IRIS, the Children’s waiver, BadgerCare, mental health programs like CCS, Katie Beckett, SeniorCare, autism services, therapies like OT, PT and Speech, personal care, supports provided in schools and even Aging and Disability Resource Centers. Many of these are “optional services” in Medicaid and are at significant risk of being cut or eliminated.  

In addition, the Senate is also debating things such as even larger cuts to Medicaid, weakening protections for people with disabilities and other pre-existing conditions by allowing states to charge them more for health care, and allowing states to stop providing Essential Health Benefits (rehabilitative services and devices, mental health services, prescription drug coverage, etc...).

There is going to be a Community Conversation About Changes to Medicaid in Wisconsin held in Oshkosh on Thursday evening of this week. We encourage people to attend and/or contact the Wisconsin Senators to ask questions and share their thoughts about this bill.  

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 June, we shine the spotlight on Ann.   This enthusiastic IRIS Consultant just won an award for Customer Experience/Living the Brand.  She encourages people to be creative and to dare to dream.  She enjoys watching people light up when they start discovering life’s possibilities.   Stop by this month's Member Spotlight to get to know Ann.

Who should we shine the Spotlight on next?

 Stacy’s Journal

Ever want just one day where everything goes right? In this month's entry, Stacy shares how she was bound and determined to make that day happen, but, sometimes, life throws you unexpected curves.  We encourage you to share your experiences as well.

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

• Inclusive Design:  Making sure that websites and apps are accessible to people with disabilities has become a big emphasis.  Learn the difference between "accessibility" and "usability" when it comes to websites and apps, and what things developers have to think about when creating them.
• Long-Term Care Survey:  The Waisman Center is conducting a WI Adult Long Term Care Survey.  Take the survey now.
• Accessibility of Fitness Centers:  A recent study found that people with physical disabilities have limited opportunities to participate in physical activity.  Read about the factors causing this.
• Health Care Kit:  The Wisconsin Board for People with Developmental Disabilities has developed a Self-directed Health Care Kit designed to help individuals with developmental and intellectual disabilities advocate for their own health care.  Check it out.
• Disability Statistics:  A report recently came out about disability statistics in the US.  Take a look at the statistics for Wisconsin.
• SPARKS Grants:  Applications are now being accepted for SPARKS Grants which are mini-grants of $500 to $3,000 are designed to help community groups of people with disabilities and family members make a change in their community.  Apply today!
• Partners in Policymaking:  Partners in Policymaking is a leadership program for self-advocates, siblings, and parents of children birth to 21 meets six times in the coming year from Friday at noon to Saturday afternoon in Madison.  Learn more and apply today! 

 Upcoming Events                                    

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

• Adaptive Bike Station Launch:  June 21st, 4p.m. to 5p.m., Hart Park, Wauwatosa WI 
• Community Conversation About Changes to Medicaid in Wisconsin:  June 22nd, 6p.m. to 7:30p.m., Oshkosh West High School, Oshkosh WI
• Adaptive Water Skiing:  June 28th, 10a.m. to 4p.m., Brittingham Park, Madison WI
• Wisconsin Youth Leadership Forum:  July 9th to 14th, Edgewood College, Madison, WI
• Adaptive Water Skiing:  July 12th, 10a.m. to 4p.m., Brittingham Park, Madison WI
• Adaptive Water Skiing:  July 26th, 10a.m. to 4p.m., Brittingham Park, Madison WI
• 2017 ADRC Open House: Focus On ABiLiTY:  July 26th, 1p.m. to 4p.m, Health & Human Services Building, Waukesha WI
• Adaptive Water Skiing:  July 26th, 2p.m. to 6p.m., Fischer Park, Burlington, WI
• Disability Pride Festival: July 29th, 12p.m. to 5p.m., Tenney Park, Madison WI
• Adaptive Water Skiing Picnic: July 30th, 10a.m. to 8:30p.m., Fischer Park, Burlington, WI
• Adaptive Water Skiing:  August 9th, 10a.m. to 4p.m., Brittingham Park, Madison WI   
• US Wake Sports Festival:  August 15th to 16th,  Traxler Park, Janesville WI
• Adaptive Water Skiing:  August 16th, 2p.m. to 6p.m., Fischer Park, Burlington, WI
• Adaptive Water Skiing:  August 23rd, 10a.m. to 4p.m., Brittingham Park, Madison WI
• Adaptive Water Skiing: September 6th, 2p.m. to 6p.m., Fischer Park, Burlington, WI
• Red Roskopf Day AbilityFest Celebrating Communities And Families:  October 1st, The Golf Club at Camelot, Lomira WI
• Veterans' Resource Fair:  October 16th-17th, Waukesha County Expo Center Arena, Waukesha WI
• 2017 Self-Determination Conference:  November 1st to 3rd, Kalahari Resort, Wisconsin Dells WI  

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.

Ever want just one day where everything just goes perfect?  I think everybody does.  For me, that day was my sister’s wedding day.  She probably didn’t realize this, but I had been thinking about the day for years—even before she met her now husband.  I knew that it was likely that she’d fall in love and get married before me.  Of course, it wasn’t easy for me to emotionally accept, but I had it in my mind for years that I was going to do everything in my power to make her wedding day all about her.  I was determined to make it the perfect day for her.

The wedding planning started last summer.  They picked a church and venue in the Madison area where they live.  Of course, my sister made sure everything was wheelchair accessible.  We spent a day in August shopping for her wedding dress with his sister and mom.  Admittedly, that wasn’t the easiest thing for me to do.  Watching my little sister try on wedding dresses with our mom and her future mother-in-law and sister-in-law brought many thoughts to my mind.  I wondered if I’d ever get the chance to do that.  However, I tried the best I could to put my emotions aside, and be there for my sister.

Last fall, she asked me to be her maid of honor.  I kind of figured I’d be in the wedding (because I’m her only sister and we’re pretty close), but I wasn’t sure I would be the maid of honor because physically I wouldn’t be able to help her much on her special day.  True to her fashion, she didn’t let my limitations make that determination though.  I was her sister; therefore, I was going to be the maid of honor in her wedding.

Since I do some freelance graphic design, as part of their wedding gift, I designed their save-the-date cards for them.  As maid of honor, you usually throw the bride a wedding shower.  I obviously couldn’t do that physically myself, so my aunt and I organized one at my parents’ house.  My aunt took care of all of the food, and I was in charge of the invitations, decorations, and games.  My mom and I also went to a shower for Steph hosted by his sister.  Again, those selfish thoughts crept into my head while attending the showers, but I did my best to push them aside.

Originally, for the wedding weekend, I had one of my personal care assistants setup to come to Madison to help me.  I thought that it’d be perfect—that way my parents wouldn’t have to worry about doing my cares; they could have one weekend where they focused solely on my sister.  That was truly my hope.  Unfortunately, that didn’t happen.  My care worker backed out about two months before the wedding, and I wasn’t able to find anybody else for the entire weekend.  Doing what my family does best, we adapted.  I found a friend who lived in the area to feed me at the reception, and my parents would do the rest of my cares that weekend.

The festivities started the first Friday in June.  My parents and I actually went down on Thursday to start getting things setup.  We had some time to explore Madison and had some great family time.  Friday, before the rehearsal, the ladies went to the Capitol and did State Street.  I loved it because I had never been down there before.  The other two bridesmaids were so nice and accepting.  It was a great time.  The rehearsal and rehearsal dinner were very nice.  I was able to fight off my mind from wandering pretty well, and I was all set for Saturday.

Saturday morning, my mom and I got our hair done first, and then we waited while the others got their hair done.  I had gotten dressed early that morning because it was just easier.  The other girls got dressed at the nature center where the pictures were taken.  Everything was going great until we started pictures outside.  Very suddenly I knew something wasn’t right.  I started having severe stomach pain and was very light-headed.  My sister knew something was wrong right away.  They brought me back inside and laid me down.  They called my parents to come get me.  They took me to the church where I laid down for a half hour before the ceremony.  By this point, Steph was ready to cancel the whole thing and rush me to the hospital.  There was no way I was going to let that happen.  It started five minutes late and they skipped a song to shorten it, but the ceremony went on.  I was able to hold it together through it.  All I could do was keep apologizing to my sister.  At the reception, I spent most of the time in the back room because I was so in much pain.  I’d try to go out and be social for about ten minutes at a time, but then the pain was just too bad that I had to go back and tilt back in my chair.  My poor parents spent most of the night helping me instead of enjoying the festivities.  I was able to give my speech using my iPad which was very important to me.  Then, there was an hour or so where I felt great.  I was able to dance and enjoy the family who was there, but, unfortunately, the pain returned.

Finally, around 9:30, we decided I couldn’t wait any longer—I needed to go in.  My poor sister was calling hospitals to see if they accepted my insurance on her wedding night.  My parents and I didn’t even say goodbye to people.  We just ran out.  Steph helped load me into the van and my parents drove me to UW Madison Hospital.  We spent 15 hours in the emergency room and I was eventually admitted for a night.  It ended up being another gastrointestinal issue likely due to having cerebral palsy. 

Words will never be able to describe how terrible I feel that this happened on my sister’s wedding day.  I feel like I was such a burden.  Even though, people keep telling me it wasn’t my fault, I will never be able to forgive myself.  It was supposed to her big day and I will always feel like I ruined it.  I keep apologizing to Steph and my parents.  They keep reminding that I did all the important parts, but I think I’ll always carry guilt about it.  I think I even feel worse about it because I was trying so hard to make the day perfect for her.

I don’t ask “why me” very often, but, admittedly, under these circumstances, I certainly did.  Life just isn’t fair sometimes.  I’m beyond blessed to have great parents, a great sister, and now a great brother-in-law who will never blame me for this fiasco.  I guess that defines the true meaning of family, doesn’t it? 

***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