News

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

Volunteer for Disability Advocacy Day!

Tuesday March 15, 2016

Disability Advocacy is successful because of the many volunteers that give of their time and expertise.

Volunteers are needed for the following duties:

Help at Monona Terrace with set up and registration: help needed between8 am-12pm(20 people needed)

• Put materials on tables
• Check participants in when they arrive
• Hand out t-shirts or lunches

Assistance at the Capitol: help needed between 12-3 (30-35 people needed)

• Guide participant to their appointments
• Assist individual who may be lost
• Assist in the debriefing rooms

Table/Visit facilitators:10am- 2:30 pm(70 people needed)

• Facilitate discussion as tables to coordinate a smooth visit
• Stay with your table members (district constituents) and escort them to the visits and help facilitate the conversations with their legislators.
  (note there may be more than one facilitator for each group and you may facilitate both the Senate and Assembly visits)
  * Every effort will be made to keep you in your own district but we cannot guarantee this.

** Facilitators are not able to volunteer to other duties between10am and 2:30 pmas you will be busy with your group

If you are interested in helping please use this link to sign up

http://www.signupgenius.com/go/30e0b48aeaf22aafa7-2016

or contact Todd or Fil for assistance:

Todd Costello:(608) 242-8335orcostellot@clanet.org

Fil Clissa:(608)698-0333orsurvivalcoalitionwi@gmail.com