News

Self-Determination Network News: March 2016

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Explore the New Self-Determination Network Website

Welcome to the new Self-Determination Network.  As you probably have noticed, things look a little different.  We switched to a new platform called Jamroom.  We've excited about this as it has a lot of cool featues.  As with any big transition, there is a lot to learn and explore.  We understand there will be bumps and detours along the way, but we’re here to help!  We've setup this page to help you get started.  We encourage you to explore the new site.  We've also started a discussion where you can ask questions and post comments about the new website.  We want to hear what you think!

Changes to Wisconsin Long-Term Care: What’s Next?

On March 2nd, InControl Wisconsin offered a webinar to provide an update on the current and upcoming developments in the state’s transition to a new Long-Term Care system. It showcased the Stakeholders’ Blueprint for Long-Term Care Redesign and covered the main ideas contained in it.  The audio recording of the webinar and the Powerpoint are now available on the InControl Wisconsin website.

Coincidentally, that same day, the Wisconsin Department of Health Services released their concept paper for the redesign of the Long-Term Care System.  We've started a discussion where people can share their thoughts and questions about it.  What questions do you have about the concept paper?  What do you think of the new system they are describing? Join the discussion today!

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 this month, we shine the Spotlight on Kathleen Johnson. In addition to being a wife and mother to children with various needs, she recently started a nonprofit art studio/gallery for people with disabilities.  Stop by this month's Member Spotlight and get to know Kathleen!

Who should we shine the Spotlight on next?

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

• Push to Eliminate Offensive Disability Language:  Here's an interesting article about how many people feel we need to eliminate "offensive" terms that are associated with people with disabilities.
• Closed Captions on Flights:  A great article about how airlines will soon offer closed caption entertainment videos on flights.
• Call for Proposals:  Proposals for presenters for the 2016 Self-Determination Conference are now being accepted.  Proposals are due April 8th.
• Traveling with a Disability:  Here is a great list of things to know when traveling with a disability.
• Residential Disability Community:  Read about a first-of-its-kind residential community for people with developmental disabilities that's set to open this Spring in Florida.
• ABLE Accounts:  Learn about how ABLE accounts will be intended to work.

Stacy’s Journal

In February, Stacy shared about having the desire for love when you have a physical disability, and for this month's entry, she reflected on all of the therapies she has had over the years. We encourage you to ask her questions and/or share your experiences as well.

Upcoming Events                                    

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

• Disability Advocacy Day: March 15th,  Monona Terrace, Madison WI
  
• Multiple Perspectives on Access, Inclusion, and Disability 16th Annual Conference:  April 13^th to 14^th, The Ohio State University’s Columbus Campus, Columbus OH
• State Of The Science Conference On The Americans With Disabilities Act: May 4th, Hilton Alexandria, Old Town VA
• 2016 Aging Empowerment Conference: Living A Self-Determined Life: June 6th,  Glacier Canyon Lodge Conference Center at the Wilderness 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.

I always look forward to the beginning of March.  Besides during dinnertime (I love Family Feud), the TV normally isn’t on much in my apartment.  However, in March, that changes.  I love watching the March Madness basketball tournaments.  I setup a bracket challenge for my family and friends;  I follow the games pretty close.  That said, basketball isn’t the only TV I watch in March.  For years now, if I’m home, I watch the CP Telethon; it’s always the first weekend in March. You see, although it has completely changed over the years, it brings back memories.  When I young, I was on a couple telethons.   I started private physical therapy when I was eight months old and it was associated with United Cerebral Palsy (UCP).  The telethon used to raise money the UCP organization.  UCP has since disbanded; the telethon now raises money for the CP Center in Green Bay.  Nevertheless, watching it makes me reminisce. While watching it, I usually post something on Facebook and tag my first physical therapist and a few of my friends who had therapy with me.  It’s amazing to think about how far we’ve all come.

It also makes me reflect on all of the therapies I’ve had in my life.  Cerebral Palsy, which is the condition I have, has various types and severities. Obviously, outcomes of therapies and treatments widely vary based on individual circumstances.  With therapies, some people are able to learn skills to lead almost a completely “normal” life.  Therapy can help people learn how to do things such as walk, talk, dress, and feed themselves independently.

I happen to have pretty severe physical limitations, so for me, therapies were more about learning how to do things functionally and adapt as well as doing range of motion exercises to keep my muscles loose.  For the first few years of my life, my parents drove me to Oshkosh (about 30 minutes from Fond du Lac where we lived) five days per week—often early in the morning before work and school—for physical therapy.  On the days I didn’t have therapy, my parents often worked with me at home.  Things such as weight-bearing on my legs and arms, working on head control, and sitting unsupported were just some of the things I worked on.

In addition to receiving physical therapy privately, I also received physical, occupational, and speech therapies at school.  When I started Kindergarten, private physical therapy was moved to after school a few days per week.  School therapies were focused on educational based goals.  Oftentimes, speech and occupational therapy worked together to find the right assistive technology equipment for me.  As I got older, school therapies were cutback so I could participate in regular classes.  Speech and occupational therapy would step in when it was time for a new communication device or if I needed support in the classroom.

Private physical therapy was also gradually cutback.  Homework and after school activities took priority for my sister and I.  It was important, though, for me to go therapy once per week.  If I missed a week, my body would feel it.  At UW-Whitewater, there was a physical therapist on campus.  I went twice per week to get stretched out.  I scheduled the appointments, but, if I didn’t show, the therapist wouldn’t chase me down; it was my responsibility to go.  When I was home in summers, I’d go to therapy once per week.  That continued after I graduated until the insurance company decided it was “preventive” instead of “rehabilitative.”  In other words, in their eyes, more therapy wasn’t going to improve my condition. 

Even though, I never took independent steps or anything like that, I did make some significant strides thanks to physical therapy.  When I was little, with some assistance, I was able to use a walker to take a few steps.  I also learned to crawl when I was in third grade.  In fact, one Christmas morning, I managed to get myself out of bed, onto the floor, and crawled all the way down to the living room by the tree.  To this day, my parents have no idea how I did that. Unfortunately, due to my body getting older and not getting therapy, I’ve kind of lost those abilities.  Those are just two of the many examples.

Oftentimes, I wonder why insurance companies stop paying for therapies when people want to try to improve their abilities. It doesn’t make sense to me. I haven’t had any physical therapy since September 2012 (when Medicaid approved eight sessions after a major surgery).  Although, my body has gotten used to it, I know I’ve lost some strength.

All that said, I wouldn’t be where I am today without all those hundreds of therapy (physical, occupational, and speech) sessions over the years.  Thinking back, I feel bad because many times I remember complaining about having to go to therapy. Now I realize what good all of it did.  My younger sister is now an occupational therapist.  Sometimes, she tries to suggest things to help me, and, admittedly, even though I know what she’s talking about, it’s really hard for me to take therapy advice from my baby sister. She and I are working on finding a happy medium!

It’s interesting to reminisce about all the therapies I’ve had.   Sometimes, I wonder if I’d had more therapies, would I have more abilities?  Probably not.  Did all those hours of therapy really pay off?  I think so!

***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.

This is a very informative blog explaning how the Achieving a Better Life Experience (ABLE) accounts are intended to work.  ABLE accounts, which are tax-advantaged accounts for people with  disabilities, are expected  to be available in most states within the next year or two.  The  blog talks about  the following points:

• Accouts are an extention of the 529 Tax code
• Eligibility 
• Maximum amounts and benefits
• Accounts have to be for qualified expenses, but it has a broad definition
• ABLE accounts can work in  addition to or instead of a Special Needs Trust

Read blog at:  http://www.huffingtonpost.com/roxana-maddahi/able-accounts-a-new-way-t_b_9350086.html

The Wisconsin Long-Term Care Coalition has pulled together the best ideas from people with disabilities, older adults, advocates and other stakeholders to present the Coalition’s views to DHS and the legislature regarding Long-Term Care redesign. These ideas are contained in the recently released Stakeholders’ Blueprint for Long-Term Care Redesign.

On March 2nd, InControl Wisconsin offered a webinar to provide an update on the current and upcoming developments in the state’s transition to a new LTC system. It showcased the Stakeholders’ Blueprint and covered the main ideas contained in it.

The audio recording of the webinar and the Powerpoint are now available on the InControl Wisconsin website.

A first-of-its-kind residential community for people with developmental or intellectual disabilities is getting ready to open this Spring.  Located in Florida, Noah's Landing will be operated by staff, volunteers, and parents.

The community will offer things such as supportive services,vocational opportunities, and much more.  Rent and expenses  will be subsidized making it affordable for  people with disabilities.  Many people are excited about this as it's thought of as an alternative to a group home.

Learn more: https://www.disabilityscoop.com/2016/02/16/once-disability-community/21909/

For people with disabilities, traveling anywhere often presents multiple challenges.  Whether it's down the street or across the world, transportation often becomes an issue for many.  From avoiding  sidewalk curbs to planning vacations, there are many things to keep in mind when traveling.

Here is a list of 10 things to know before traveling.  It has a lot of links to valuable resources.

The Department of Health Services released their draft concept paper for Family Care/IRIS 2.0 today. There are two chances to testify on the paper on March 7th.  DHS will accept written testimony about the concept paper through 5 p.m., on March 7th.

Now accepting proposals for presenters for the 2016 Self-Determination Conference, November 8-10.  Are you using self-directed supports in an interesting way? Do you want to share your story at the SD Conference? 

We’re looking for new and innovative ideas that help you and others live successfully in the community. Share ideas about transportation, employment, community living, housing and more. Take a look at our special sessions on life hacks! Do you have some life hacks you want to share? Share these ideas with over 500 advocates this November! Proposal deadline is April 8. 

Download the 2016 Presentation Proposal Form  

***Thanks to the Wisconsin Board for People with Developmental Disabilities for sharing this information with us.

The Wisconsin Dept. of Health Services sent out a news release today with some details about the proposed redesign of the long-term care system. The news release is in advance of the concept paper scheduled to be released the first week of March. The release includes information about Choice for Members and Quality Measures.

DHS has scheduled two public hearings that will be held March 7, shortly after the concept paper for the redesigned system is released. They will accept written comments until March 7th.  

Here's an opportunity to share your thoughts and opinions with the Independent Living Council of Wisconsin as they develop their next state plan.

www.surveymonkey.com/r/M9HSWNZ