News

The U.S. Department of Transportation’s Federal Transit Administration (FTA) has announced the availability of $6.3 million in competitive grant funds for transit coordination projects that improve access to healthcare. 

View Notice of Funding Opportunity (Federal Register)

Applications due: November 13, 2018

FTA’s Access and Mobility Partnership Grants focus on transportation solutions to medical appointments and other non-emergency healthcare services. The grants will help improve options for people with limited transportation choices and bridge the gap between service providers in the transportation and health sectors.

Funding is available under two programs: the Innovative Coordinated Access and Mobility (ICAM) Pilot Program, which supports projects focused on non-emergency healthcare travel needs, and the Human Services Coordination Research (HSCR) program, which funds research to reduce gaps in services to provide safe, affordable and reliable mobility options to seniors, people with disabilities, and low-income individuals. 

• ICAM Grants.gov Opportunity ID: FTA-2018-002-ICAM
  
• HSCR Grants.gov Opportunity ID: FTA-2018-006-HSCR
  

For more information

Kelly Tyler, FTA Office of Program Management, Kelly.Tyler@dot.gov

Travel can be hard for people with disabilities.  Certain accommodations can be hard to find.  A man from Eau Claire is working on an app to help people with disabilities to help make travel more accessible.  In addition to GPS features, the app will allow people to check out accessibility options at local hotspots.

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 Self-Determination Network News:

September 2018

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

There is Still Time to Register!

Register today for the 2018 Self-Determination Conference!  The annual conference works to empower people with disabilities in Wisconsin to have more control over their lives. More than 600 people each year participate in the conference to learn more about self-determination and Self-Directed Supports so they can live independently, be members of their communities, and use public funds efficiently. The conference participants include people with disabilities and their family members, direct care providers, and professionals from Wisconsin’s disability community.  Registration closes October 12th.  Register today!

BPDD Releases State Budget and Policy Platform Recommendations

The Wisconsin Board for People with Developmental Disabilities (BPDD) is preparing for the upcoming elections and state budget and legislative session!  They have finalized their 2019-2021 budget and policy platform, which focuses on seven priority issues that impact people with Intellectual and Developmental Disabilities and their families in Wisconsin.

The Board has created a sheet for each issues: 

• Direct caregiver workforce
• Transportation
• Employment
• Education
• Medicaid & Long-Term Care
• Public Benefit Reform
• Improving self-direction and independent decision-making

We encourage you to read over these sheets and share your thoughts with your legislators.  We also encourage people for share this information with family and friends.  

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 September, we shine the spotlight on Dave.   As a Behavioral Consultant, he helps to develop an understanding of what people are trying to communicate or achieve through behavior.  He believes that interdependence should be the goal of a self-determined life.  Stop by this month's Member Spotlight to get to know Dave.

 Stacy’s Journal

“Life isn’t fair.” Most of us have heard that saying more than once in life. In this month's entry, Stacy opens up about the recent struggles she has had and how she tries to persevere through them.  How do you persevere through life's challenges? We encourage you to share your thoughts and experiences as well.

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

• Self-Direction Questionnaire:  Citizen Network is working with the European SKILLS project to identify the extent to which self-directed support is being adopted in different countries around the world.  Take their questionnaire to help them track progress of self-directed supports.
• Special Olympics Exhibit:  With a new exhibit, the Smithsonian Institution is highlighting how athletics have helped to dramatically change the lives of people with intellectual disabilities over the last 50 years.  Learn about how the exhibit showcases the history of Special Olympics.
• Push for Doctors:   Federal lawmakers are pushing to make doctors and other health care services much more available for people with intellectual and developmental disabilities. Read about how a bipartisan bill would help.
• Airline Accessibility:  A lawsuit is seeking to force the nation's airlines to make major changes to better accommodate travelers with disabilities.  Find out about how a lawsuit may speed up airline accessibility.
• Google Accessibility:  In the past few years, Google has shifted the way that it thinks about accessibility, moving from grassroots advocacy to codified systems.   Learn about how it's  finding ways to help people with disabilities navigate the world.
• Disability Statistics:  The Centers for Disease Control and Prevention recently released new statistics for disability.  Read about the most common disabilities.
• Disability Policy:   Federal policy is often implemented with little consideration for how it will impact people with disabilities, but that could change under a new proposal.  Find out about how a new bill may change that.
• Lack of Disability in Film: According to a new report, people with disabilities still remain largely underrepresented in major movies. Learn just how few movies have characters with disabilities.
• Call for Artists:  Access to Independence is in the process of looking for artists as part of the commemorations for their 40^Th Anniversary.  Find out how to get involved.
• Call for Presenters:  The Circles of Life Conference invites you to submit a proposal for the 2019 conference.  Applications due September 30th.
• Disability Museum:  Thanks to a high school history class studying history of disability, a student believes that there needs to a National Museum of Disability.  Learn why.
• ADA Amendment Act: Ten  years ago this month, the Americans with Disabilities Amendment Act was passed.  It expanded the numbers of Americans covered  by the ADA.  However, many feel that the Amendment Act  doesn't go far enough.  Find out why.
• Family Care Wavier Ideas:  The Wisconsin Department of Health Services (DHS) is preparing their applications to renew the Family Care waivers, and they would like input about what to include in the renewals.
• Accessible Gaming:  Microsoft will soon sell a controller that offers touch controls, as well as connectors for each button on a standard controller.  Read about how this will help.

 Upcoming Events                                    

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

• BPDD Community Conversation: September 26th, 10:30a.m. to 1p.m., Independence First, Milwaukee WI
• Ability Fest:  October 14th, 7:30a.m. to 4p.m., Camelot Golf Course, Lomira WI
• 2018 Self-Determination Conference: October 29th-31st, 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.

Ten  years ago this month, the Americans with Disabilities Amendment Act was passed.  It expanded the numbers of Americans covered  by the ADA.  However, many feel that the Amendment Act  doesn't go far enough.   impairments that are controlled by medication or other measures still are considered disabilities if, when considered without the mitigating measures, the impairment would substantially limit the individual’s major life activities. 

Read more 

Microsoft knows that there are almost two billion video gamers in world, and they are ready to make it easier for gamers with disabilities to play. Today, some gamers cannot hold a game controller or have difficulties pushing more than one button on the controller at a time. Game controllers are complex and have many buttons on different sides, but not everyone can hold them. Some people with disabilities have built their own controllers, but this is extremely difficult and complex to do.

Microsoft will soon sell a controller that offers touch controls, as well as connectors for each button on a standard controller. This way, a user could plug in switches that they could not normally use on a standard controller. If a user cannot push a button with their hand, they could use an elbow or a foot. This controller will launch in the fall and will work on Xbox systems and Windows 10 computers.

Read more

The Wisconsin Department of Health Services (DHS) is preparing their applications to renew the Family Care waivers. They would like your input about what to include in the renewals. If you have ideas you would like them to consider including in the waiver renewals, read the request letter on their website.

The Family Care program is administered through concurrent 1915(b) and 1915(c) federal Medicaid waivers which will expire on December 31, 2019

“Life isn’t fair.”  Most of us have heard that saying more than once in life.  Whether it’s your favorite team losing a game or learning devastating news about a loved one, hearing someone say “life isn’t fair” in those situations often isn’t what we like to hear.  As I’ve said in previous entries, comparing ourselves to one another is human nature.  Most times, when we compare ourselves, we are invoking pity on oneself over our circumstances.   It’s during these times that life truly doesn’t seem fair.  For people with disabilities and health conditions, self pity is something we vastly try to avoid, but, sometimes, at least for myself, I can’t.

I admit, the last few months have been pretty rough.  Many issues relating to having a disability have surfaced, and I’ve been faced with a dose of reality.  My care situation continues to be an unbelievable struggle.  I had four people quit in one week.  Two of the people were brand-new hires and didn’t show up for training on multiple occasions.  I try to give people a few chances, but, when it comes down to it, I need responsible people because I literally depend on them to live.  Due to these people quitting, I’m left with a ton of open shifts.  Thank goodness my parents are retired because they’ve been my savior.  I’ve had to go to their house for a few days and they’ve also come up here (it’s about a half hour drive) multiple days per week to help me.  I also often go without a lunch shift (which includes using the restroom).  This situation isn’t at all what I want.  I absolutely hate relying on my parents.  I’m burdening them and their plans.  They, of course say, it’s ok, but it’s not!  People tell me that I can’t take it personally when people no show or quit, but it’s almost impossible not to under these circumstances.

Due to these care issues, discussions about my future have started.  Quite frankly, it’s pretty depressing.   I’m a very realistic person, but I guess I’m also a dreamer.  While I know that we need to come up with a better plan or solution, in the back of my mind, I ponder what if I could meet that special person who I could spend the rest of my life with.  Everything from around the clock care, to group homes, to assisted living have been brought up.  I understand these are the realistic options for my situation, but, honestly, it breaks my heart that we have to even discuss these options for me.  Boastfully, I take a lot of pride in the independence I do have.  Even though, deep down I understand assisted living or a nursing home will probably be reality for me at some point down the road, I’m only 33 years old.  I don’t want that for myself.  Selfishly, I think I deserve better.

Though definitely most prevalent, cares aren’t the only issues I’ve had.  Earlier this summer, I saw a gastrointestinal specialist to see if there was anything that could be done to prevent more stomach issues.  I guess I was hoping for some magical solution; instead, I was basically told nothing could be done and to probably expect more problems.  Unfortunately, due to cerebral palsy, it’s just the way my body is.  Additionally, I had been dealing with another medical issue for over six months; I finally saw a specialist for it last month and learned, though it can improve with treatment, it’ll likely never completely go away because of my condition.  Thankfully, it’s very minor and something I can easily live with, but it’s just one more thing to deal with.

Additionally, I’ve been dealing with some social issues due to my physical limitations as well.  People make plans and try to include everybody, but don’t realize that the plans aren’t realistic for a person in with my circumstances.  While I know people never mean to exclude me, it’s very frustrating when I’m not able to participate in things due to my physical limitations.  Usually I’m pretty good at seeing happiness through other people’s eyes, but, in some situations, it’s almost impossible to do.  There are just some things that I desperately wish I could do, and when people I love get to do them, sometimes, it’s just hard. 

 How do I deal with self-pity and disappointment?  Unlike most people my age, I don’t have a significant other to vent to or to comfort me.  This often poses a problem because often, besides a few close family members and friends, the only other outlet I have is social media.  I often irrationally post something on Facebook out of frustration.  Far too many times I’ve heard it from my mom because family members have called her asking what’s wrong with me.   I’ve gotten better at refraining from posting, but, admittedly, I’m not perfect.  Putting my feelings on Facebook allows me to talk with friends who have similar situations.  Depending on what the situation is, I often just message people now instead of posting.

Do I want pity?  Absolutely not!  I certainly admit, though, there have been far too many times lately when I felt hopeless and sorry for myself.  It really does no good, but it’s human nature to.  It’s during those difficult times that I rely on my wonderful family and friends to help me through.  I also think people with disabilities have a stubborn side to them, and, often, I think that’s what helps us persevere through the challenges life throws at us! 

***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.

Thanks to a high school history class studying history of disability, a student beliieves that there needs to a National Museum of Disability.    He points out that almost all other minorities have a national museum.  The museum would be a hub of information for, by and about people with disabilities.  It'd bring aspects of disability together and allow visitors to understand what it means to be part of the disability community.  

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Circles of Life Conference 2019
35^th Annual Statewide Conference: May 2 – 3, 2019
Holiday Inn – Convention Center, Stevens Point, Wisconsin
 

The Circles of Life Conference invites you to submit a proposal (or two) for the 2019 conference. Between 400-500 individuals with disabilities, their families and professionals from across Wisconsin attend the Circles of Life Conference each year. The conference is a unique opportunity for participants to develop new skills, learn up to date information and form lasting relationships.
 
We are looking for presenters including: parents, family members, youth and adults with disabilities, professionals, providers, volunteers, or other potential presenters with information or expertise in a broad range of topics that affect families and individuals with disabilities.  Previous topics have included:

• Leadership and advocacy
• Community
• Education
• Family and self-care and wellness
• Health and mental health topics
• Long-term care
• Transition
• And many others…

We hope that you will consider submitting a proposal for the 2019 conference or share this information with other individuals who you think would be excellent presenters.
 
Please visit the Circles of Life website at circlesoflifeconference.com/call-for-presenters/ for application materials. The deadline for proposals is September 30, 2018.
 
For more information, please visit the Circles of Life Conference web site at:circlesoflifeconference.com or find us on Facebook.