Happy New Year from DSAW!

Dear Friend,

Happy New Year! As we celebrate the beginnings of 2017, I also celebrate the amazing year that is ending. You helped DSAW climb to new heights during the past year, and I’m thrilled to share our success.

In 2016, we served 4,500 individuals with Down syndrome and their families throughout Wisconsin, and countless others through our resources, webinars, and other virtual support. We continued our core programming of training medical professions on delivering a fair and compassionate Down syndrome diagnosis, helping individuals overcome obstacles through “Roadmap Sessions,” training children on what it means to be a good friend to someone with Down syndrome, and more.

But more than just continuing our core programs and services, 2016 was a year of growth and exciting changes for DSAW. We officially launched the Parent’s First Call Program, which connects new and expectant parents to resources and support 24 hours a day, 7 days a week. Our 7 Down Syndrome Awareness Walks throughout the State increased their fundraising by 23% in 2016… WOW! I’m so excited for you to see the impact this additional funding will have in your community. 

We also focused efforts on reaching families throughout the state, no matter where they live. We launched a new series of statewide webinars on important topics for families and medical professionals. We also launched a new, organized, and easy-to-use website (click around after you finish reading this post!). Finally, we moved the DSAW state headquarters to a new location in West Allis, WI. This office serves the entire state while piloting replicable programs and services in the Greater Milwaukee Area.

2016 could not have been so successful without our incredible community partners. In the Greater Milwaukee Area, we’re thankful for Bader Philanthropies, Cardinal Capital Management, the Home Depot, Dries Painting, the Racine Community Foundation, the Stackner Family Foundation, Nonprofit Management Fund, Professional Construction Inc, Trawicki Electric, Sid Grinker Restoration, Ben’s Cycles, and many other foundations and businesses. Thank you for supporting our programs and services. A special thank you to Potawatomi Bingo & Casino’s Heart of Canal Street Program for giving DSAW more than $35,000 in December! 

Thank you to the Otto Bremer Trust in La Crosse; the Community Foundation of North Central Wisconsin in Wausau; the Gordon Flesch Company, Green Bay Packers Foundation, LaForce Employee Giving, and Cornerstone Foundation in Green Bay; and the Lyssa and Andrew Schmidt Charitable Fund in the Fox Cities. We LOVE you all, and are so grateful for your support. Click here for a full list of our partners and sponsors around the state.

I’d also like to thank the individuals and families around the state who make our work possible. Thank you to the DSAW State Board, the Chapter Advisory Boards, all of our top fundraising teams at the walks, and our 800+ statewide volunteers. As a member and volunteer-driven organization, you are the backbone that supports everything we do. Thank you!!

2016 was an amazing year for DSAW, and I’m confident that 2017 will build upon this past success. At the end of 2016, we finalized DSAW’s new 5-Year Strategic Plan, which will guide DSAW through its planned growth and change over the next 5 years. We have reorganized the way we talk about our programs and services, and the way we approach our fraternal support. More than anything, we want to be known as an organization that supports the entire state of Wisconsin. No matter where you live, DSAW is here to help you and your family. No programs or services nearby? Get in touch with us to start a Parent/Grandparent Support Group, Coffee Club, Monthly Playdate, Mom’s Night Out, or other activity near you. Read more about our 5 Year Strategic Plan here.

Looking ahead, I am filled with hope. Individuals with Down syndrome and their families are more prepared than ever before in history to lead rich and rewarding, meaningful lives… but an agency like DSAW must be at the forefront of cutting-edge programming, individually designed to help them excel at school, at home, in the community, and to prepare them for an independent life with housing, supports, and income. Because of your support, Wisconsin is on its way to becoming the best-supported state for individuals with Down syndrome. We have big things ahead of us in 2017. With your support, I know that anything is possible.

Thank you for investing your time, talent, and treasure in DSAW’s future!

Warmly,

Dawn Nuoffer
Executive Director
Down Syndrome Association of Wisconsin

Parent's First Call Program Partnership

DSAW is excited to announce that it will be partnering with Parent to Parent of Wisconsin to implement our statewide Parent's First Call Program. 

Parent to Parent of Wisconsin provides parent support to parents of children with special needs through a one-to-one connection with another parent who has similar experience and who knows firsthand about the feelings and realities that come with having a child with special needs. When Robin, the P2P director, approached DSAW about joining forces for the Parent's First Call Program, we knew this was a perfect fit.

New and expectant parents of children with Down syndrome will contact DSAW for initial support, resources, and to receive their Welcome Basket / Expectant Parent Pack. Parent to Parent will support DSAW's Parent's First Call program by using their statewide infrastructure to help train and match DSAW parent mentors with newly diagnosed families across the state who are looking to connect with someone who has walked in their shoes.

Thank you Parent to Parent of Wisconsin for partnering with us in this life-changing work! As we move forward, we are looking for parents throughout the state who would like to serve as "support parents," providing resources, support, and friendship to new and expectant parents. Stay tuned for a list of upcoming trainings! 

A Look Back on December 2016

The month of December was full of holiday cheer and new programs and events throughout the state. Check out what we've been up to!

Fox Cities

Fox Cities Holiday Party
On December 3, Santa welcomed forty-eight (48) families of children with special needs from the Fox Cities for the Santa Celebration hosted by WisconSibs, Inc and DSAW Fox Cities. A record attendance of more than 120 children with disabilities and their siblings, 78 adults, and 60 volunteers played games, decorated cookies, made new friends, and got some lap-time with Santa. 

This was the 13th year that WisconSibs has offered the event.  Spirited volunteers from high schools, businesses and the Humane Society, financial support from the Appleton Rotary and DSAW Fox Cities, and in-kind gifts from Fleet Farm, make it possible to host the event and provide a gift from Santa for each child attending. 

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Chippewa Valley

Chippewa Valley Holiday Party
We had a wonderful time at the annual holiday party, including visits & presents with Santa, horse-drawn carriage rides in the snow, food, music, and lots of fun. Thanks for everyone who helped make this another memorable event!

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La Crosse

La Crosse Holiday Party
Families attended the La Crosse Holiday Party (despite the bad weather!) to enjoy food, crafts, and holiday music. Santa also visited and passed out presents (& hugs) to the children. Thanks to everyone who attended and helped spread holiday cheer!

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Greater Milwaukee Chapter & DSAW State Headquarters

Milwaukee Holiday Party
More than 250 people attended the annual Greater Milwaukee Holiday Party on Saturday, December 3rd. We held the party in the Nathan Hale High School Cafeteria, which was a perfect location! Santa made an appearance to hand out presents to each child, and we enjoyed a taco/nacho bar, hot chocolate, cookies, and plenty of crafts and games. We also spent plenty of time dancing with our favorite DJ. Check out photos from the event here.

Milwaukee Self-Advocate Shopping Event
Self-Advocates with special needs and volunteers from Caroll University and New Berlin West High School joined us for an afternoon of Holiday Present Shopping. Everyone had a great time buying presents for loved ones. And of course, we also grabbed coffee and gelato! Thanks for everyone who made this a fun event.

Motor Skill Playgroup
Enroll today for our twice-monthly motor skills playgroup, taught by a certified Occupational Therapist! This program is for kids 6 and under. While your kiddo is having fun, you can join us for coffee club!

Grandparents Support Group
A note from our group facilitators: "Hello. We’re Jim and Robbie Fackelman and we will be facilitating the Grandparent’s Support Group.  We are the proud grandparents of four year old, James. James lives in Conifer, Colorado with his mom and dad and eighteen month old brother, Robert. James has been a gift to our whole family.  He has taught all of us what pure love, kindness, and acceptance means.  James has made our lives better because of his ability to make us stop and enjoy every single moment, every kiss, every hug, and every accomplishment.

We are very anxious to hear your stories and to share your photos. The Grandparent’s support group is a place where we can share resources, tips, books, articles, new advances, and ways to be involved in DSAW and the Down Syndrome community.  We will be meeting on the first Tuesday of each month from 4:00 to 5:00 at the DSAW office, but because of the holiday in January, our meeting will be on January 10.  Every grandparent is welcome.  We want to get to know you and your grandchildren, make new friendships, and support each other in our journeys." Join us in January!!

Young Leaders Bootcamp
Self-Advocates joined us for Young Leaders Bootcamp this month on Communication Management. Consider signing up for our January Bootcamp!

Cooking with the Kiddos
We had a great time at our first month of Cooking with the Kiddos. We made a full meal together and then got to enjoy the hard work! This class is a great time of family bonding, plus a free meal... what could be better? Join us next month.

Young Leaders Academy
Self-Advocates joined us for Young Leaders Academy twice in December. We are still working our way through the Job Skills Training curriculum, but we will start a new lesson soon. This is the perfect time to jump into our course -- consider joining us in January!

Tween Club
Tweens had a great time at December's Tween Club. We played foursquare, gym games, and had lots of fun playing the Wii! We also had an awesome nacho bar. Many of our parents got to attend Parent's Night Out while their children had a night of fun. Join us in January! 

Parent's Night Out
Parents hung out at the Brass Tap during December's Parent's Night Out. We had a blast! Join us in January at Club Paragon in Greenfield.

Family Zumba
We are excited to dive into Zumba in the coming months! We have a volunteer Zumba instructor who is ready to instruct our families in this fun and family-friendly activity. Join us in January!

Spanish-Speaking Support Group
Multiple families joined us for this month's Spanish-Speaking Support Group! We had a great time. Join us in January!

Family Movie Night
We got snowed out for our family movie night this month, but we're excited for January's movie - Frozen! 

Milwaukee Wave Game
About 40 people joined us for the Milwaukee Wave Game on Saturday, December 17th. Thanks to our AMAZING partners Profession Construction Inc, tickets were free, and families received food and beverages too! In addition, some of our families participated in special activities before the game. Thanks so much, PCI!

A New Website and a New Era for DSAW

By Dawn Nuoffer, DSAW Executive Director

I am excited to announce the official launch of DSAW’s new website. This website has been a work-in-progress for a number of months, and we’re thrilled to share the final product with you. I encourage you to take a look around at the beautiful photographs (you might see you or your loved one!), updated gold-star resources, and a reorganized, fresh take on who DSAW is and what we do.

Our website launch couldn’t be more perfectly timed: we have just finalized DSAW’s new 5-Year Strategic Plan, which will guide DSAW through its planned growth and change over the next 5 years. We will continue to be an organization that is first and foremost built on fraternal support, but we will incorporate new and exciting components into those offerings.

Our programs and services will now be organized around eight areas: Statewide Fraternal Support, Statewide Parent’s First Call, Statewide Medical Training, Statewide DSAW-Family Services, Statewide Education Services, Statewide Down Syndrome Awareness, Statewide Advocacy, and the DSAW State Headquarters. Overall, we hope this reorganization sends a crucial message to families and individuals across the state: no matter where you live, DSAW is here to support you.  

While we will continue to utilize our effective Chapter system, we have incorporated incremental levels of support from the individual, all the way up to the Chapter level. We believe that in doing so, we can more effectively serve people whether they are in the smallest, most rural areas of the state, or a major metropolitan area like Milwaukee.  We have structured ourselves to serve people across four different “levels” – Individuals, Parent Support Groups, Regional Committees, and DSAW Chapters. Read more about these four levels here.

In addition to our vital Fraternal Support, DSAW will continue focusing on the key areas that are essential to our mission: Parent’s First Call to reach new and expectant parents, Medical Training to educate medical professionals about delivering a fair and compassionate Down syndrome diagnosis, DSAW-Family Services to help individuals with individualized direct services and support, and Down syndrome Advocacy and Awareness. Now, we’re excited to add replicable, niche, and model programming to this list.

At our West Allis-based DSAW State Headquarters, we serve the entire state of Wisconsin while piloting replicable programs and services in the Greater Milwaukee Area for implementation by families across the state. We will start by hosting programs for families (Family Movie Nights, Zumba Class, and Cooking with the Kiddos), parents (New Parent Support Group, Spanish Speaking Support Group, Alzheimer's Support Group, Autism Spectrum Support Group, Grandparents Support Group, Mommy & Me Yoga, and Coffee Club), little ones (Motor Skill Workshop, Speech Therapy), tweens (Tween Club, Family Activity Days, Cooking with the Kiddos), and Self-Advocates ages 15 and older (Drivers Education, Tech Skills Class, Young Leaders Bootcamp, Young Leaders Academy, and Club DSAW).

These exciting programs and services will not solely be available in Milwaukee. Through our more organized volunteer/fraternal support model, we can launch programs just like these all over the state in the next 5 years. Programs that help individuals with Down syndrome learn crucial skills and build relationships with their peers, programs that connect families together for fraternal support, and programs that create lifelong community memories. 

The Down Syndrome Association of Wisconsin is looking forward to a bright future for the individuals and families that we serve. Through our programs, services, and events, we’re confident that Wisconsin can be the best-supported state in the nation for individuals with Down syndrome. We hope you continue to join us on this journey. Click here to start at our new website’s homepage and take a look around – not just at our new website, but at DSAW’s future. I think you’ll like what you see.

Research Opportunities at the Waisman Center, Madison WI

Research study on Parenting and Language Learning in Young Children with Down Syndrome

If you have a child with Down syndrome between 2 and 5 years of age, you and your family are invited to participate in a research study conducted by Dr. Audra Sterling at the Waisman Center, University of Wisconsin – Madison.

The purpose of this study is to learn more about the relationships among parenting, social interactions, and language learning in children with Down syndrome. 

If you decide that you and your family would like to participate in this study, we will ask you to complete questionnaires related to your child’s development and daily behaviors, as well as your marital relationship and overall health.  We will come to your home and record your family as you interact during different daily activities, such as during making a snack together, playing and reading a story.  During our visit, we will also complete developmental assessments through interacting with your child.  Additionally, we will request that you use our audio recording device to record 1-2 evenings for three hours before bedtime.   Your family will be compensated $50 for your time.

If you are interested in this study or would like to learn more, please call the Study Coordinator at (608)263-5145 or email RIDDLL@waisman.wisc.edu 

Study on Spoken Language in Children, Adolescents and Young Adults with Down Syndrome

If you have a son or daughter with Down syndrome between 6 and 23 years of age,
you and your child are invited to participate in a research study being conducted by Dr. Audra Sterling at the Waisman Center, University of Wisconsin-Madison. This research study is part of a larger team with four different sites across the United States.

The goal of this study is to learn more about how samples of spoken language can be used to measure change over time in the spoken language, problem solving, and behavior of individuals with genetic syndromes. In the future it is possible that measures of spoken language production may be useful as one way to learn whether different drugs can help individuals with genetic syndromes to learn and use language more effectively.

If you decide that you and your son or daughter would like to be in this study, we will ask you to visit the Waisman Center for either one, two or three visits. At each visit, we will collect a sample of your son’s or daughter’s language in two different settings: a conversation with the examiner and telling a story from a wordless picture book. We will also give your child some tests that will measure his/her problem solving skills and how much language she/he understands. We will ask you to fill out some questionnaires and participate in an interview about your child’s everyday living skills.

If you would like to learn more about this study, please call/email our study coordinator, Susen Schroeder: (608) 263-5145, sschroeder@waisman.wisc.edu

Wisconsin Long-Term Care Updates

Confused on what’s been going on over the past 18 months with Long Term Care (LTC) in Wisconsin? A member of the DSAW Advocacy Committee has summarized the important events for us:

February, 2015:  The Governor’s biennial budget proposes significant changes to the Medicaid funded long term care (LTC) programs in Wisconsin.  Changes include Family Care’s integrattion with acute/primary medical care and administration by insurance companies, and the elimination of the IRIS (Include, Respect, I Self-Direct) program, reducing the number of regions from 8 to no more than 3 and expanding Family Care to all counties.

February, 2015: Legislative Joint Committee on Finance (JFC) proposes an alternative to the Governor’s proposed budget that maintains the move to insurance company-administered long term, but provided for a self directed option that was the same as the current IRIS plan, expanded Family Care to all counties, decreased the number of regions to 5 and required consultation with stakeholders. It also required that the Department of Health Services present a Concept Paper to JFC, no later than 4-1-15, laying out the details of the new plan for vote by JFC.

March, 2015: Hundreds of LTC participants, families, providers and advocates attended public budget hearing around the state opposing the proposed changes to LTC and giving impassioned testimony on merits of the current system.

March – July, 2015: Participants, families, stakeholders and advocates from around the state rally to oppose these changes and ask that these changes be removed from the budget, and that stakeholders be part of the process of developing a long term care plan that would build on the strengths of the current plan and assure sustainability for years to come.

July, 2015: JFC passes their budget as proposed. The Governor approves it with line item veto changing the number of regions to 3.

July, 2015: 65+ members of the WI Long Term Care Coalition convened to create “The Stakeholders’ Blueprint for Long Term Care Redesign” to offer DHS, JFC and the state legislature constructive stakeholder input on LTC.

September 29, 2015: The first DHS sponsored, invitation-only, stakeholder meeting consisting of 30-40 stakeholders from around the state is held. 

January, 2016: The first of monthly stakeholder meetings with the Secretary of DHS is held to collect input on the DHS Concept Paper.  DHS invited a representative from each of the following: AARP, LTC Coalition, Disability Right WI, Board for People with Developmental Disabilities, Save IRIS, Independent Living Centers, Gwaar/ADRC’s and the Governor’s office.

February, 2016: LTC Coalition “Stakeholder Blueprint” is released publically.

March 31, 2016: DHS Concept Paper is delivered to JFC.

April – May, 2016: Hundreds of LTC participants, families, providers and advocates attended public hearings around the state opposing the proposed changes to LTC and giving impassioned testimony on merits of the current system. They continue their grassroots advocacy by writing, calling and visiting their elected officials.

June, 2016: Due to lack of support and the finding that the proposed changes will not provide the desired cost savings, Secretary of DHS, Kitty Rhoades, withdraws the Concept Paper.

June 18, 2016: Secretary of DHS, Kitty Rhoades dies. 

Over the past 18 months, LTC in Wisconsin has been a pressing and often contentious issue that has mobilized thousands of people in the state to take action and make their voices heard.  DSAW thanks its members for their support and action during this important time in the lives of those with disabilities. Your support, phone calls and letters have made a huge impact.  

The Governor, DHS and the legislature are committed to moving forward with positive changes to the current long term care system.  Some of the items they hope to implement are better quality and outcome measures, increased community-based employment, and integrating acute/primary care with LTC service to achieve better health outcomes.   

For now, DHS is working on plans for these improvements, but much is on hold awaiting the Governor’s appointment of the new Secretary of Health Services.  It our sincere hope that Governor Walker appoints a person who has publically demonstrated a strong belief in self-direction, person-centered planning, home and community-based services, integrated and living-wage employment, and commitment to collaboration with stakeholders and the public in developing a LTC plan that is effective, respectful, cost effective and sustainable for many years to come.    

Election Day is Coming Up!

Election Day is less than 40 days away. Do you know where the candidates for State Assembly and State Senate stand on long-term care? 

The Wisconsin Long Term Care Coalition's latest publication provides examples of the types of questions you should ask candidates about Family Care and IRIS. 

Here is what you can do:

1. Attend a town hall, candidate forum or listening session and ask your questions in person!

2. E-mail or ask candidates questions using social media. Many candidates have Twitter and Facebook accounts.

3. Share this questions document with people you know and encourage them to ask their candidates where they stand on long-term care.

4. Submit a Letter to the Editor of your local paper about the importance of knowing where candidates stand on issues that impact people with disabilities and older adults. 

5. To find out who is on your ballot in November, visit :myvote.wi.gov

Once You Know Where the Candidates Stand---VOTE!!

Early voting is now taking place in many Wisconsin municipalities. 

There are 14 early voting locations in Madison and three early voting locations in Milwaukee.  Check with your local municipal clerk to see what hours they will be open for early voting. You can find your local clerk's information here: https://myvote.wi.gov/en-us/MyMunicipalClerk 

Don't forget, you will need to present a photo ID in order to vote! For information on Wisconsin's Voter ID law, visit: http://www.bringitwisconsin.com/

Walk raises awareness of Down syndrome

Watch the video (link below) about the 2016 La Crosse Down Syndrome Awareness Walk!

FOX6's Tom Pipines spent some time at Western Lakes Golf Course on August 17