News

96 Self-Determination Network News:

September 2019

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Hurry!  Registration Closes Friday!

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 this Friday, September 27thRegister 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 second in his series.  Join the conversation: Please share comments, and thoughts with one another using the network. 

Read Scotland Report #2

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

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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 Roxanne. When she isn’t traveling around the world, spending time with family and friends, reading, or gardening, she works with people teaching them about Self-Determination and Self-Directed Supports.  Stop by this month's Member Spotlight to get to know Roxanne.

128 Stacy’s Journal

"Many people my age have friends from moms’ groups, friends from their kids’ activities, friends from a volleyball league or other activities. While I’ll probably never friends from situations such as those, I’m incredibly fortunate to be friends with so many people who made such a profound impact on my life. It really does take a village, and I’m truly blessed to have an outstanding village of people who continue to support me! "

In this month's entry, Stacy talks about her special village of people who continue to support her. Who's in your village?  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:

  • Public Comment on Guidelines for Onboard Wheelchairs:  The U.S. Access Board has released for public comment advisory guidelines for wheelchairs used on commercial passenger aircraft during flight.  Comments due October 21st.  Let your voice be heard!
  • Federal Program Extended: For the third time this year, additional funding will keep alive a federal program that moves individuals with disabilities from institutions into the community. Find out how this money will help, but why advocates are concerned.
  • Delay of Electronic Verification Visit: The Wisconsin Department of Health Services has been granted an extension which pushes the Electronic Visit  Verification (EVV) implementation date back into 2020.  Learn what EVV is about.
  • Exercise and Fitness for All Act: 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.  Read about what this bill would include.
  • Assistive Technology Brief:  The Administration for Community Living (ACL) has released a new Issue Brief on Assistive Technology. Learn what the brief includes.
  • Assistive Robots:  Assistive robots are growing in popularity.   Read about how they are helping people with disabilities be more independent.  
  • Emergency Preparedness:  Emergency preparation is important for everyone. However, older adults and people with disabilities often face additional challenges during emergencies.  Learn about some things to consider when creating a emergency plan.
  • Peers as Caregivers:  A unique program in Washington D.C. teaches people with disabilities to be care providers for their peers. Find out how this program works.
  • Call for Presenters:  Applications to present at the Circles of Life Conference, May 2020! Parents, family members, providers or anyone who has ideas and wisdom to share is encouraged to apply!   The deadline for proposals is October 1st.

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 #2 From Lynn Breedlove


By SD Network, 2019-09-21

Scotland Report #2: Challenges to Self-Direction Around the World
-Lynn Breedlove

In August, I represented In Control Wisconsin at an international Disability Congress in Scotland, and presented a paper there: www.incontrolwisconsin.org/selfdirectionworldwide. I attended several workshops on self-direction and participated in a brainstorming session with self-direction advocates from several countries. I learned a lot, including the dangers and difficulties facing self-direction in other countries (which have similarities to the challenges we face here). I believe that Wisconsin can learn from the strategies being used elsewhere to overcome these challenges, which I hope to learn more about in the coming year. Here are some of the challenges I heard about, and some thoughts about how they connect to Wisconsin policies and practices:

Self-Direction Challenges in Other Countries

Connection to Wisconsin Policy or Practice

FUNDING. Self-direction has been popular in England for several years, but two years ago the government cut funding for “personal budgets” by 40%. Today, many people aren’t receiving the level of support they need, which has led to some disillusionment about self-direction.

Self-direction advocates in Wisconsin have worried this could happen here, but so far disability and aging advocates have successfully defended Medicaid long-term care programs (including IRIS and Family Care) from significant funding reductions.

RED TAPE. Some individuals and families say they are worn down by all the paperwork, procedures, rules, etc. associated with self-direction.

Some IRIS participants and families using the IRIS Waiver have made similar comments in recent years.

FREE MARKET. In some countries, there are unrealistic expectations of the “free market” (i.e. an assumption that whatever people need will automatically be available in the marketplace of services). That’s not always true.

Just having funding in your individual self-direction budget for something doesn’t guarantee you’ll get it. Some supports and services aren’t available in some parts of Wisconsin, e.g. some people who want a community job can’t find a local provider agency or independent job developer/coach to help them achieve that.

CONFUSION. In many countries, it’s not exactly clear what self-direction means and who can do it. Is it something people have to do on their own, or with the help of family/friends? Is it only for people who have already demonstrated self-reliance? Or for anyone who chooses it?

We have some consensus between government and advocates about these things in Wisconsin. State law says anyone who is eligible for Medicaid long-term care can choose to self-direct their supports and services, but there continue to be examples of confusion in our system, e.g. when people are told, “You wouldn’t be a good candidate for self-direction”.

 

Deadline to submit comments: October 2, 2019

In 2014, OSERS awarded a five-year grant to establish and operate the National Technical Assistance Center on Improving Transition to Postsecondary Education and Employment for Students with Disabilities. The Center assists service providers who implement evidence-based and promising practices to ensure students with disabilities exit high school ready for success. As OSERS prepares to recompete the grant, they want to hear from you via comment on this blog.

OSERS is asking for feedback relevant to these questions:

  1. What challenges are you currently experiencing in serving youth with disabilities between the ages of 14 and 24 who may or may not be in school?
  2. Do the five primary goals described above accurately represent your current challenges and technical assistance (TA) needs and support your state’s goals? If not, what do you suggest we remove, revise, or replace?
  3. What kinds of TA tools, resources, or materials developed have been the most useful and relevant to your work?
  4. What kinds of new TA tools, resources, or materials should a U.S. Department of Education-funded TA Center on transition develop in order to most efficiently and effectively support your state’s work in this area?
  5. Are there any new or emerging TA needs or topic areas that a U.S Department of Education-funded TA Center on transition should consider? If not, are there any current TA areas that could be expanded upon or repositioned to better meet your needs?
  6. Should a U.S. Department of Education-funded TA Center on transition continue to identify potential intensive TA sites through an application process or should this process be modified? If modified, what do you suggest?
  7. How can a center on transition best support states in their work of improving collaboration and coordination among State Education Agencies (SEA), Local Educational Agencies (LEA), State Vocational Rehabilitation Agencies (SVRA), Career and Technical Education (CTE), Parent Information and Training Centers, and other relevant agencies and organizations?
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Circles of Life Conference 2020

May 7-8, 2020

Wilderness Resort, Wisconsin Dells 

CALL FOR PRESENTERS!

 

 

Apply NOW to present at the Circles of Life Conference, May 2020! Parents, family members, providers or anyone who has ideas and wisdom to share is encouraged to apply!   The deadline for proposals is October 1.   

To find the application materials and learn more visit  circlesoflifeconference.com/call-for-presenters/

Previous conference session topics have included:                              

  • Advocacy and leadership,
  • Community issues like recreation, travel and inclusion in activities,
  • Education issues like partnering with schools,
  • Family and self-care, mindfulness and wellness,
  • Health and mental health topics,
  • Long-term care,
  • Transition, and
  • Many others!

If you have questions about submitting a presentation proposal, contact Meg Steimle at Meg.Steimle@gmail.com

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A unique program in Washington D.C. teaches people with disabilities to be care providers for their peers.  The program is run by a company that provides support to people with disabilities.  The goal is two-folded--provide career opportunities to people with disabilities while also addressing the shortage of home health aides.

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Every September, National Preparedness Month brings focus to disaster planning and getting ready for emergencies. This year’s theme says it best – we should aim to be “Prepared, Not Scared.”

Of course, even with the best plan, a catastrophic storm, or wildfire, or any other kind of emergency situation can still be very scary. And no amount of preparation will completely eliminate the stress of evacuating your home. But with a comprehensive, individualized emergency plan, no one should have to be afraid for their life, health, or independence.

Emergency preparation is important for everyone. However, older adults and people with disabilities often face additional challenges during emergencies because of health issues, mobility challenges, and use of devices that rely on power. Those individual circumstances make having a plan absolutely critical.

Whether you’re updating your existing plan, or creating one for the first time, asking yourself these questions can help frame what you need to think about:

  • What kinds of disasters are most likely to affect your community?
  • How might a disaster affect you?
  • Is evacuation a likely possibility? Where would you go?
  • Could you make it on your own for at least three days? What would you need?
  • What problems would you experience if you did not have power for 8 hours? 24 hours? A week?

Every plan will be different, based on individual needs. However, everyone should have an emergency kit that includes food, water, and at least a week of medications. Include this this card, completed with your vital medical information, and if you have a communication-related disability, this card can help first-responders assist you in the way that is best for you. Include a flashlight and extra batteries, and first aid supplies. Ready.gov has an outstanding emergency kit checklist that will help you think of everything you need. (For additional ideas, see this checklist for kids.)

Other things to think about when you’re putting together your plan include:

  • Which shelters are able to accommodate your individual needs? If possible, be ready to tell first responders, so that you are able to evacuate with your family, service animal, caregiver, personal assistant, and assistive technology devices and supplies.
  • Plan ahead for accessible transportation. Work with local services, public transportation or paratransit to identify your options, and include contact information in your emergency kit.
  • If you are dependent on dialysis or other life-sustaining medical treatment, note the location and availability of more than one facility.
  • If you use in-home medical equipment that requires electricity, talk to your health care provider about how you can prepare for a power outage.
  • If you use an augmentative communications device or other assistive technologies, plan for how you will communicate with emergency personnel if your equipment is not working -- this might include laminated cards with phrases, pictures or pictograms.
  • If you use assistive technology, make sure your plan considers what you will need to take them with you. Have extra batteries available. To simplify replacing equipment that is lost or destroyed, your emergency kit should include model information, where the equipment was purchased, and how it was paid for (Medicaid, Medicare, private insurance, etc.).
  • Don’t forget to include your service animals and pets in your planning. Have an emergency kit that includes food, water, medicines, and first aid supplies for them, too.

Finally, consider the help you may need to execute your emergency plan. Create a support network of friends, family and others who can assist you during an emergency, and share your disaster plans with them.

National Preparedness Month also is a great time for communities to make sure their disaster response and recovery plans consider the needs of older adults and people with disabilities. Across the nation, the community-based organizations that form the aging and disability networks are providing critical expertise that is resulting in emergency plans that are more inclusive and accessible than ever before. If you are working to improve your community’s plan, I encourage you to bring the networks in as partners.

Whether you’re working on your personal emergency plan, are part of a community planning team, or are supporting older adults and people with disabilities in the community (or all of the above!), ACL’s website can point you to many resources available to help.

Planning for disasters is everyone’s business, and together, we can make sure everyone is included.

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Member Spotlight: Roxanne Price


By SD Network, 2019-09-02

20190902_142216.jpgMeet Roxanne Price.  When she isn’t traveling around the world, spending time with family and friends, reading, or gardening, she works with people teaching them about Self-determination and Self-Directed Supports.  She has always been very passionate about Self-Determination and Self-Direction.  She encourages people to ask questions and be clear about what you want.  We’re so fortunate to have Roxanne as a member of the Network!  

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

Roxanne is very passionate about Self-Determination and promoting Self-Directed Supports! She explains that it has been her primary focus since 1998, when she was hired as the Self-Determination Project Coordinator in La Crosse County back when Family Care was first getting started. La Crosse County was one of the five Family Care pilot counties in Wisconsin.  She participated in many meetings and discussions with self-advocates, their allies and many others to make sure that Managed Care in Wisconsin emphasized personal choice, responsibility and empowerment.  “People didn’t like the idea of being “managed” and we didn’t want the program to become an impersonal, “one size fits all” approach to assessing needs and providing supports for people,” she says. Since her position was funded through a Robert Wood Johnson grant, when the grant ended, she was hired as a Care Manager with the Family Care Program in La Crosse where she continued my involvement in Self-Determination and Self-Direction. In 2008, the La Crosse Program expanded to include seven additional counties and they became known as Western Wisconsin Cares. She says that even though she misses the ongoing connections that she had when she was a Care Manager, she was excited to be hired as the Self-Directed Supports Coordinator for the eight county regions.  So, for the past 11 years, she has been focusing exclusively on Self-Determination and supporting the successful use of Self-Directed Supports. Two years ago, three Family Care Organizations merged into the organization that is now known as Inclusa. “I think we are very fortunate to have a dedicated SD/SDS team that provides education and support throughout our service regions and I love being able to follow my passion with others who feel the same way,” she exclaims! 

How are you involved with self-determination?

Roxanne is currently one of the SD/SDS Managers at Inclusa. Inclusa is one of Wisconsin’s Family Care Organizations and covers much of the state.  She helps members (clients) and their Care Management teams learn about Self-Determination and Self-Directed Supports, and she helps them decide how to set it up so it best fits their individual strengths and needs. Also, when there are problems or concerns, she gets involved to help figure out the best solutions. 

Why did you join the SD Network?

Roxanne says that she is always looking for the latest information about Self Determination and Self-Directed Supports and she knew that the SD Network would be a good resource!  

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

Roxanne encourages people to be clear about what you want and don’t be afraid to ask questions to be sure you understand things!  She says to try to be respectful even if you disagree with what someone says and ask for support when you need it. “Finally, it’s ok to make a mistake – sometimes it’s the best way we learn! Nobody is perfect,” she says! 

What are some of your hobbies?  

Roxanne loves to read! True stories are especially inspiring to her. She also really enjoys taking pictures of people, places and things.  In the spring, she likes to work in the garden – even pulling weeds!  She explains that her friends and family are very important to me and she spends a lot of time with them. Recently, she has gotten brave enough to travel to other countries and that has really been exciting her!

 ***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:  Village of Special People


By Stacy Ellingen, 2019-08-31

“It takes a village to raise a child.”  It’s a saying commonly used when talking about supporting a child who has disabilities.  Whether it’s before the child is even born, right after birth, or years later, when parents learn that there’s something “wrong” with their child, panic strikes.  A million questions go through their heads.  Getting that initial diagnosis and prognosis is often life-changing for the entire family.  After the shock wears off, it’s often realized that, although it’s probably different than originally planned, life goes on.  It’s realized that there are special people in the world to help guide you on this journey of life.  Many times, special relationships are formed and these amazing people are lifelong friends.  They may not be soccer coaches or dance moms you once dreamed of being friends with; instead, these people are therapists, paraprofessionals, and other families with special needs that have supported you along the way.

As I’ve explained in other entries, complications during birth caused brain damage resulting in my diagnosis of cerebral palsy.  Though I wasn’t officially diagnosed until I was three months old, because of the lack of oxygen I had at birth, my parents knew immediately I’d likely have some limitations.  At eight months old, I started physical therapy.  I went to a private therapy place in Oshkosh.  Because of the dynamics of this place, the physical therapist and some of her clients were able to form a special bond.  There were five or six of us around the same age with similar circumstances.  It was a pretty unique situation.  The families were able to help each other with different resources and things.  A couple of us were on United Cerebral Palsy (UCP) telethons together.  There was a speech therapist and occupational therapist in the facility that some of us saw.  I saw the physical therapist until I was over 16 years old.  We became like a big family.  We supported each other through life’s ups and downs.  Thanks to Facebook, many of us have reconnected and kept in touch.  It’s very neat to see where we all ended up.  Looking back, it’s amazing to see how far we’ve all come.  I recently met the physical therapist for dinner.  It was really fun to catch up and fill her in on what I’m doing.  It’s partly thanks to her, I am where I am today.

Another group of those special people are the therapists I had in school.  I’ve explained before that throughout my school years I had physical, occupational, and speech therapies.  The frequency of these therapies depended on my needs each year.  I had some great physical and speech therapists throughout the years.  I still occasionally keep in touch with some of them and they love hearing how well I’m doing.  I was also very fortunate to have the same occupational therapist from Early Childhood through my senior year of high school.  Again, she helped my family and I navigate through school system.  She was such an important key to my success.  In fact, when I do presentations or participate in board meetings, I often think of her because we worked for years and years with different assistive technology for my communication.  I have her on Facebook and sometimes I send her a message just saying “Hey I’m doing this and this—it’s because of all your help back in the day I’m able to do these things.”

Paraprofessionals are another group of a very special people in life.  Again, in past entries I’ve explained that thanks to the amazing paraprofessionals I had, I was able to succeed in regular education classes starting in kindergarten on.  These ladies helped me with whatever I physically needed to succeed in the regular class.  Everything from getting my jacket on and off, to feeding and toileting, to getting books out and taking notes, to setting up my computer or being my scribe for tests…  the list goes on and on.  I was truly blessed to have many outstanding paraprofessionals in my life.  Because they worked closely usually one-on-one with me every day at school, I became pretty close with most of them and keep in touch with them to this day.  I was incredibly blessed to have the same main assistant for eleven years.  Obviously, we became very close and remain close to this day.  We consider each other family.  We’ve become friends with each other’s extended families.  It’s definitely a very special relationship.  I think everybody in both of our lives know that we wouldn’t be the same people we are if we hadn’t met!  It was definitely meant to be!

There are many other special people in my life, but these relationships probably wouldn’t have happened if I didn’t have the unique circumstances I do.  Many people my age have friends from moms’ groups, friends from their kids’ activities, friends from a volleyball league or other activities.  While I’ll probably never friends from situations such as those, I’m incredibly fortunate to be friends with so many people who made such a profound impact on my life.  It really does take a village, and I’m truly blessed to have an outstanding village of people who continue to support me! 

***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.

Assistive robots are growing in popularity.  They are being used to assist people with disabilities, the elderly, toddlers, and industrial workers perform physical tasks.  The aim of assistive robotics is to develop robotic aids for supporting people living independently and those who have degenerative limitations, such as elderly and people with disabilities.  The increase in funding worldwide for research on assistive robotics is expected to fuel the growth of the assistive robotics market during the forecast period.

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ACL has released a new Issue Brief on Assistive Technology. Assistive technology (AT) includes software, devices, equipment and products that improve the functioning of individuals of all ages with disabilities. Assistive technology can affect a person’s well-being by improving their ability to walk, eat, bathe, communicate, see, speak and live independently. Technologies also can help address social isolation and improve quality of life by assisting people with communication, mobility, and other daily activities.

This issue brief discusses:

1) the important role of assistive technology in helping people of all ages with disabilities live full and independent lives in their communities; and

2) certain sources of public funding for the technology, including Medicare, Medicaid, and programs that the Administration for Community Living (ACL) manages.  

View the Assistive Technology Issue Brief

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