The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) at ACL is announcing a funding opportunity for a  new Rehabilitation Research and Training Center (RRTC) project.

Rehabilitation Research and Training Centers

The purpose of the RRTC program, which are funded through the Disability and Rehabilitation Research Projects and Centers Program, is to achieve the goals of, and improve the effectiveness of, services authorized under the Rehabilitation Act through well-designed research, training, technical assistance, and dissemination activities in important topic areas as specified by NIDILRR. These activities are designed to benefit rehabilitation service providers, individuals with disabilities, family members, and other stakeholders.

RRTC on Family Support: The purpose of this particular RRTC is to conduct research, training, technical assistance, and related activities to contribute to effective support of family caregivers of people with disabilities, and ultimately to improved community living, health and function, and employment outcomes of people with disabilities who are supported by family members.

Please visit the link above for more details about the grant opportunity and application process. This grant opportunity closes on June 10, 2019.

A new television series chronicling the experiences of people with autism and other special needs as they search for meaningful employment is set to debut.  The eight-episode Series “The Employables” on A&E Network will feature two individuals with autism, Tourette Syndrome or other conditions in each episode.  The job seekers work with specialists to identify their talents and show employers what they can offer.

Read more

Caring for loved ones with special needs is often very rewarding, but it can also take a physical, emotional and financial toll on families.  Many families rely on respite care as a reprieve.  A bipartisan bill introduced this month known as the Lifespan Respite Care Reauthorization Act of 2019, would tag $200 million over the next five years to boost respite care services across the country.  

Read more

Legislation that the President recently signed ensures that a program that moves people with disabilities from institutions to the community can stick around while advocates push for a longer-term solution. The President allocated an additional $20 million to Money Follows the Person. Through the program, states can access Medicaid funding to pay for employment supports, housing and other services so that people with disabilities can transition from nursing homes and other institutional facilities to homes in the community.   

Read more

 Self-Determination Network News:

April 2019

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Advocacy Award Nominations

Do you know somebody who has gone to extraordinary lengths to advocate for people with disabilities? The Wisconsin Council on Physical Disabilities (CPD) is pleased to announce the Dan Johnson Advocacy Award. This award is in memory of Dan and his many accomplishments and was created to recognize people with physical disabilities who are outstanding advocates.

The Dan Johnson Advocacy Award is aimed at recognizing excellence in advocacy, and public policy change for people with physical disabilities, rather than disability advocacy. Individuals nominated should be people with physical disabilities who advocate for people with physical disabilities and have had a positive impact on federal or state legislation, public policy, or programs that affect people with disabilities in Wisconsin. The advocacy work conducted should exceed normal expectations of regular advocacy practice, and should be inclusive and respectful of the values and independence of those who are affected by it.  The nomination deadline is June 30th.  Learn more and nominate someone 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 April, we shine the spotlight on Don and Tyler.  For this dynamic father/son duo, life centers around sports.  Tyler, a Special Olympian, has traveled all around the world competing in many different sports. For dad, Don, volunteering with Special Olympics ultimately led to a career switch, so he could make an impact in the lives of people with disabilities. Although it isn't easy, he encourages parents with children with different abilities to push them to their fullest, so they can be productive members of society.    Stop by this month's Member Spotlight to get to know Don and Tyler.

 Stacy’s Journal

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

• Removal of "Derogatory Language":  Recently, Governor Evers issued an order to  remove "derogatory language" from the state administrative code.  Learn which  terms will be removed and what they will be replaced with.
• Marital Status Bill:  Under current law, when two people who rely on Supplemental Security Income marry, their benefits can be at risk because they must jointly report their income. Find out how, under a new proposed bill, that and other rules regarding SSI and marriage would change.
• "Community-Based" Clarification: Federal officials have released guidance to clarify what living arrangements for people with disabilities are considered to be "community-based."  Read about what the criteria is.
• Airlines Disclose Damages:  Thanks to a new law, for the first time ever, airlines had to publicly report how many wheelchairs or scooters they broke or lost.  Find out what was revealed.
• Grant Opportunity for Transition Age Youth: The Administration on Community Living announced a grant opportunity for research, training, technical assistance and related activities to improve employment outcomes of transition age youth with disabilities.  The grant application is due May 24th.
• Furniture Attachment Blueprints:  For people with disabilities, using regular furniture can often be challenging.   Learn about what one store is doing to furniture more accessible for everybody to use.
• Research Funding Grant Opportunity on Employment:  The Administration on Community Living announced a grant opportunity for research, training, technical assistance and related activities to improve employment outcomes of people wit developmental and intellectual disabilities.  This grant opportunity closes May 28th.
• Uproar Brings Attention to Other Program Cuts:  Recent uproar over a proposal to end federal funding for Special Olympics has brought attention to other potential harmful cuts to programs for people with disabilities.  Read about how advocates are using the situation as  a  great opportunity to inform lawmakers about other harmful cuts.
• Exhibitor Opportunity:  Do you create jewelry, candles, art, or knit goods? Do you teach piano or offer consulting for social media? If you have any services or products that you want to tell the Madison disability community about, the Disability Pride Madison festival is for you!  Learn more and sign up today! 
  

 Upcoming Events                                    

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

• Webinar: Using An ABLE Account To Support Youth From Transition To Independent Living: April 25th, 1p.m. to 2p.m., Online
• Self-Advocacy Spotlight : April 30th, 6p.m. to 8p.m., WI FACETS, Milwaukee WI
• 2019 Circles Of Life Conference: May 2nd & 3rd, Holiday Inn Convention Center, Stevens Point WI
• Webinar: Accessible Sales And Service Counters: May 2nd, 1:30p.m. to 3p.m., Online 
• Dance Card: May 3rd, 7:30p.m. to 9p.m., Shattuck Music Center at Carroll University, Waukesha WI
• Long Term Care Advocacy Team: May 14th, 2:30p.m. to 3:30p.m., IndependenceFirst, Milwaukee WI
• Transportation Consumer Advocacy Team (TCAT): May 28th, 1p.m. to 3p.m., IndependenceFirst, Milwaukee WI
• Long Term Care Advocacy Team: June 11th, 2:30p.m. to 3:30p.m., IndependenceFirst, Milwaukee WI
• Transportation Consumer Advocacy Team (TCAT): June 25th, 1p.m. to 3p.m., IndependenceFirst, Milwaukee 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.

Disability Pride Madison is delighted to offer the opportunity to exhibit your products and services! We've had so many incredible vendors in the past - from our friends at Wisconsin Talking Books to the Madison Children's Museum to the Community Living Alliance! If you provide a valuable service to the disability community, we would love for you to come and celebrate with us at the Disability Pride Festival 2019!

We also are offering a unique chance for people with disabilities who operate a microbusiness (a business with a total yearly profit of $20,000 or less) to exhibit with us for FREE! Do you create jewelry, candles, art, or knit goods? Do you teach piano or offer consulting for social media? If you have any services or products that you want to tell the Madison disability community about, this festival is for you! In the past, we've been so lucky to partner with small businesses like Cocoa Bean Skin Care and CLW Productions fiber art!  You will have a table underneath a canopy to show off whatever you have to sell or just display! If you have any questions, you can simply send us an email at disabilitypridemadison@gmail.com!

Please spread the word far and wide about this opportunity! We want to see you, your friends, and your family at the festival this summer!

Apply now!

Recent uproar over a proposal to end federal funding for Special Olympics has brought attention to other potential harmful cuts to programs for people with disabilities.  The President later recinded the proposal to cut funding for Special Olympics; however, the budget still calls for cuts to Medicaid and eliminating funding for autism training and research.  It also includes cuts for employment support for people with disabilities.  

While advocates are concerned about the proposals, they feel the uproar over the Special Olympics cut has given them a prime opportunity to inform lawmakers and the public while disability funding has been fresh in the news cycle and on social media.

Read more

The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) at ACL is announcing a funding opportunity for a  new Rehabilitation Research and Training Center (RRTC) project.

Rehabilitation Research and Training Centers

The purpose of the RRTC program, which are funded through the Disability and Rehabilitation Research Projects and Centers Program, is to achieve the goals of, and improve the effectiveness of, services authorized under the Rehabilitation Act through well-designed research, training, technical assistance, and dissemination activities in important topic areas as specified by NIDILRR. These activities are designed to benefit rehabilitation service providers, individuals with disabilities, family members, and other stakeholders.

RRTC on Employment of People with Intellectual and Developmental Disabilities:The purpose of this particular RRTC is to conduct research, training, technical assistance, and related activities to contribute to improved employment outcomes of people with intellectual and developmental disabilities.

Please visit the link above for more details about the grant opportunity and application process. This grant opportunity closes on May 28, 2019.

Ever feel like there isn’t enough time in the day?  I think everybody has felt that way at some point.  Whether it’s juggling time between work and family, school and friends, volunteering and working, or just living life, we all have found ourselves trying to find a good balance.  Sometimes, it seems difficult to find time for everything.  People have to prioritize their activities based on what’s important to them.  For people with disabilities and health conditions, it’s no different.  Often, we have some additional things, such as appointments, treatments, and cares to juggle.

A couple of years ago, I wrote an entry about time management.  I explained how I have to be a very organized person and how I live a very scheduled life.    Everything from the time I get up in the morning, to when I eat each meal, to when I use the restroom throughout the day, to when I get back in bed at night… everything is scheduled.  It’s just the way it has to be since I live independently with the assistance of drop-in care aides.  I’ve gotten used to this and I have a routine that works well for me.  Having scheduled care times also means that I have to take advantage of my “free” time between shifts.  I have to make sure I get everything I need done between shifts.

Recently, I’ve found my schedule is getting more and more complicated.  In addition to my increased involvement in disability advocacy efforts, more health issues due to cerebral palsy have surfaced, and I’ve had more medical appointments in the past two months than I’ve ever had before.  After my unexpected surgery in early January, my neurosurgeon team referred me to a rehab doctor (he’s actually a physiatrist) to oversee my medical care.  I saw him first in early March and he referred me to multiple different doctors for various issues I’m having.  I admit, my parents and I weren’t sure what to expect going into the appointment, and it was a bit overwhelming getting all these different referrals.

Though it may change in the near future, my parents continue to drive and accompany me to my medical appointments.  My mom knows my schedule, so, for right now, she schedules all of my appointments.  We’ve had several already and have a few more in the coming weeks.  Each appointment often results in subsequent appointments or treatment.  We’ve learned that some issues are treatable, but some aren’t.  Cerebral Palsy is considered a non-aggressive condition, but the secondary effects of it often causes havoc as people get older. 

Some appointments result in ordering new equipment and additional personal care needs which means more meetings and appointments to get everything setup.  With more equipment and exercises comes the need for training for my staff which takes time not only to actually do, but also to setup and coordinate.  Right now, my mom and I are trying to figure out the best way to do this.  We’re going to probably end up setting up two training session that my staff can attend.  Since IRIS doesn’t really allow for training hours in my budget, I’m likely going to buy gift cards for those who attend.  

Obviously, these new things will increase the length of my personal care shifts and eventually change my whole routine.  Fortunately, I had my annual Self-Directed Personal Care screen in the middle of all this, so the nurse was able to capture all that’s happening.  My hours will increase quite a bit when my new plan starts in a few weeks.  I’ve been busy trying to figure how to reconfigure shift times to be able to do all these new things.  It’s tricky because I’m not exactly sure how long everything will take.  It’s going to be trial and error for a few months.

Between doctor appointments, meetings with people about equipment, doing paperwork, scheduling aides, and coordinating everything, I feel like disability-related issues have consumed my life lately.   After my mom made me another appointment a few weeks ago, I finally said to her, “I wonder how people find a balance between treatment and just living?”  When do you say enough is enough and just live life?

I don’t know the answer to that question.  On one hand, I know treatment and interventions will probably allow me to be more comfortable and live independently longer.  However, on the other hand, part of me wants to say forget it and just live life.   As I’ve explained in past entries, I normally don’t think of myself as having a disability, but, admittedly, having a disability has been very apparent in life lately.  I feel like I’ve overcome too many obstacles to let my disability completely take over my life.  I have to continue to strive to find the right balance, so I can live life to fullest! 

***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.

Meet Don and Tyler.  For this dynamic father/son duo, it’s all about sports.  Tyler is a multi sport Special Olympian and has competed all around the world.  This talented athlete has run multiple marathons and gearing up for the World Track & Field Championships in Australia!  For dad, Don, volunteering with Special Olympics ultimately led to a career switch, so he could make an impact in the lives of people with disabilities.  He and his wife raised Tyler in a way that always prepared him to be on his own, and he is very proud that Tyler is living independently.  It’s not easy, but he encourages parents to push children and help them grow to be productive members of society!  We’re so fortunate to have Don as a member of the Network! 

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

Don is the proud father three adult children—two boys and a girl.  He has a Bachelor of Science degree in Chemistry and a Master’s degree in Biochemistry, but, after volunteering for seven years with the organization, in 2010, he became the Vice President of Sports & Health Programs with Special Olympics Wisconsin.  He made the switch to the non-profit to make an impact in the lives of people with disabilities.  His middle child, Tyler, is a Special Olympian.

Tyler lives independently in a condo with the assistance of a part-time caregiver.  He works in the online ordering department at Woodmans.  He participates in Special Olympics and has competed in over nine sports including track, bowling, alpine skiing, basketball, softball, soccer, volleyball, tennis, and flag football.  He went to the 2014 Special Olympics USA games and won a gold medal on the state flag football team.  As the Special Olympics Wisconsin Health Leader and Global Ambassador, he promotes healthy lifestyle and spreads the positive message of Special Olympics. He has raced in multiple half-marathons (best time 1hr 36min) and one full marathon (3hr 39min). He has competed in world level competitions in track (Ecuador) and half-marathon Portugal) and is currently training for the World Track & Field Championships for athletes with intellectual disabilities in Australia this October. 

How are you involved with self-determination? Why did you join the SD Network?

Don shares that he has always been a strong proponent of finding ways for individuals to help create and fulfill their life dreams. He explains that he and his wife raised Tyler in a way that they were always preparing him to be able to live on his own, and their school district did a very good helping Tyler learn work skills that transitioned in many years at Panera Bread and now Woodman’s. “Tyler loves being productive and bring home a paycheck. He had been planning on moving out for several years and last October that dream because a reality,” he says.

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?

Don is extremely proud that Tyler is living on his own.  He explains that young adults of any ability dream of moving out from mom/dad’s house and living independently. Young adults with disabilities are no different.

For Tyler, the Paralympic running experience has been pretty exciting. He is able to travel on his own with the USA Team. 

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

Don encourages parents not to treat your child different just because they have a disability. He says to push them and help them grow to be productive members of society that will someday not need mom or dad. “That is hard as parents. Especially when you have a child with a disability. Also help prepare them for life without you,” he says. 

What are some of your hobbies?  

In his free time, Don enjoys reading, doing crosswords, hiking, and watching sports.  When Tyler isn’t busy working or training, he enjoys watching sports and hanging out with friends. 

***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.