Recently, Governor Evers signed his first bill into law.  With many people with disabilities in attendance, he signed a bill that removes the term "mental retardation" from state agency rules and regulations.  The new law immediately replaces the term with "intellectual disability" in all administrative code.

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Advocates worry that Medicaid funding for people with disabilities could be jeopardized if some states succeed in overhauling how they receive federal dollars.  Some states have shown interested in receiving "block grants" from the Centers for Medicare and Medicaid Services.  Currently, states receive matching funding from the federal government without pre-set limits.  If states choose to change that approach, they would have better flexibility on how to spend the money, but they'd receive a fixed amount.  Advocates are worried that this wouldn't allow enough funding for health care or  home and community based services for people with disabilities.

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2019-2020 Training Opportunities for Families of Youth with Disabilities
 

What is a Transition Parents in Partnership?

Transition Parents in Partnership (PIP) is an opportunity for families to learn about the transition process for their youth with disabilities ages 14-21 in the areas of employment, education, living and health.

Why Should I attend a Transition PIP?

• Learn about planning for life after high school
• Learn about valuable resources and adult services
• Become part of a network of parents who have youth with disabilities
• Explore ways to share the information I have learned
• Strengthen partnerships between the many professionals I interact with on behalf of my child

 
For more information about PIP and for the locations and dates for the 2019-2020 PIP trainings visit: https://wspei.org/families/pip.php
 

What is Youth in Partnership with Parents for Empowerment?

Youth in Partnership with Parents for Empowerment (YiPPE) is an opportunity for youth with disabilities (ages 14-21) and their parents to learn about the transition process in a unique way while building real life skills in the areas of employment, education, living and health.
 
Why Should I attend YiPPE?

• Learn about planning for life after high school 
• Learn about valuable resources and adult services
• Become part of a network of parents who have youth with disabilities
• Explore ways to share the information I have learned
• Strengthen partnerships between the many professionals I interact with on behalf of my child

 
Why Should my Youth Attend YiPPE?

• Learn how to make decisions for themselves
• Get involved in their school and community
• Learn how to speak for themselves
• Prepare for college and/or work
• Meet other youth

 
For more information about YiPPE and for the locations and dates for the 2019-2020 YiPPE trainings visit: www.wspei.org/families/yippe.php

If I’m Interested in either of these trainings, what do I do next?

• To register for a YiPPE training, contact Sherry Gundlach 920-896-1003.
• To register for the Fennimore Transition PIP training, contact Kari Todryk 608-745-5421.

 
All trainings are FREE of charge to families.  Overnights, meals, and resources are paid for with a DPI IDEA Discretionary Grant.

*To learn more about WSPEI please click here to visit the website*

Meet Marilee.  This advocate extraordinaire doesn’t let limitations get in the way of leading a very successful life.  In addition to owning her own graphic design business, she’s very involved in ADAPT.  As the National ADAPT Media Chair, she’s looking forward to the Disability Integration Act being passed very soon.  In her free time, she loves spending time with her husband and godchildren.  She encourages people to get involved in disability advocacy and to never give up. We’re so fortunate to have her as a member of the Network!

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

Marilee was born and raised in Stevens Point, WI.  Born with something called Tetra-Amelia, she’s missing all four limbs, but that doesn’t stop her. She tells people, “don’t feel sorry for me. I don’t know what it is like to have arms or legs, so I’m not missing anything!”

After high school, Marilee went to UW-Whitewater where she earned a degree in Graphic Design.  She explains that her experience in college was great.  She had personal care workers that assisted her and it was the first time she was able to live independently. It was in college that she got involved in advocating for disability rights.  She connected with a national advocacy group called ADAPT.  ADAPT is a national grassroots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom.  She also became involved in the Independent Living Council of Wisconsin where she served as the Council’s Secretary and Chair of the Membership Committee.  She and her husband have attended several national rallies.  They co-founded Central Wisconsin ADAPT. She’s very proud to be National ADAPT’s Media Chair and an ADAPT member!

Marilee owns her own business called Adamski-Smith Multimedia Solutions.  Through her business, she provides a host of services. She can design and create logos, business cards and brochures; make slideshows, do video editing and DVD authoring, photo restoration, DVD conversion, website design and hosting.  She really enjoys owning her own business.

Currently, Marilee and her husband live in Brookfield Wisconsin, and in the very near future, and they also plan to design and build a universal design home. They hope to start a family soon.  Her disability does not define her. She says, “I am a wife, business owner, sister, Godmother, Aunt, and a great friend. Who knows where life will take me next; I am so thankful for all the experiences that I went through in my life. If I didn't have the experiences that I did, I wouldn't be the person I am today and it all started with how I was brought up by my parents and the help of self-directed services that allows me to live independently in the community, in my own home. They have shaped me into the person I am today!”

How are you involved with self-determination?

Marilee explains that her parents taught her to always believe in herself and that if she set her mind to some goal that she can achieve it. One example of this was: after graduating from college, she had worked for a couple of different graphic design companies, but she felt that she was not being challenged and at times the opportunities were less. So, she decided to start her own graphic design business, Adamski-Smith Multimedia Solutions.

Why did you join the SD Network?

Marilee joined the SD Network mainly to network and get to know people.  Being part of the Self-Determination Network allows her to connect with other people that have disabilities that want to live independently in the community. “Being part of all of these different organizations, I have had the opportunity to meet with different Senators and Legislators at the State level and in Washington DC to advocate for disability rights,” she says.

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

Recently, Marilee has had to scale down on my graphic design business because she has an increasing larger role in ADAPT. One of the primary things they are focus on is to pass the legislation - Disability Integration Act (DIA). She explains that the DIA is civil rights legislation to address the fundamental issue that people who need Long Term Services and Supports LTSS are forced into institutions and are losing their basic civil rights. The DIA is intended to assure that people with disabilities can live in the community rather than be forced into nursing facilities and other institutions. This groundbreaking legislation establishes statutory civil rights language - comparable to the ADA - which requires public entities and Long-Term Service and Supports insurance providers to change their policies, provide community-based services first, and offer Home and Community-Based Services (HCBS) to people currently in institutions. This legislation builds on the 25 years of work that ADAPT has done to end the institutional bias and provide seniors and people with disabilities HCBS as an alternative to institutionalization.

She’s very excited about this legislation because it will be the next big step in disability rights since the ADA and it will give people with disabilities the right to choose to receive long term care in their own home and community settings instead of being forced into nursing homes. “For people like myself, having this right means many other opportunities open up. We can choose where they would like to live, go to school, get a job, etc.,” she says.  She’s looking forward to being part of this history as they’re working hard to get this legislation passed this summer in the House. If people would like to participate in this effort she has many ways in which everyone can help. If you would like to help please email her.

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

Marilee encourages people to never give up and reach out to your support networks. She explains that there will be obstacles in life, but you can find allies in your journey who can help you get back up when facing an obstacle. She notes that the SD network is an example of allies.

She also encourages people to get involved in disability advocacy and join organizations and groups that help people with disabilities live an independent life. “ADAPT, WBPDD and the SD Network are great organizations and groups that believe that all people with disabilities should be treated as equal as non-disabled people,” she says.

What are some of your hobbies?

In her free time, Marilee likes to go camping and geocaching. Every summer, she tries to pack in at least six camping trips. She also likes to cook new recipes, go swimming, do jigsaw puzzles, going to the movies, theater plays and concerts. She loves spending time with family and friends as well--especially her husband, Joseph and two god children, Avery and Cole!

***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.

In recent years, more and more housing options for people with disabilities have appeared.  In Phoenix Arizona, a whole neighborhood is being developed for people with special needs.  Residents will own their own homes, and the homeowners association will employ a director and overnight staff to promote community engagement and  safety..  Residents will be responsible for arranging their own support services.  Though the neighborhood will be geared toward people with disabilities, anyone will be able to buy a home in the area.

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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.

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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.  

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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.   

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 Self-Determination Network News:

April 2019

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

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.