Raising Awareness For World Down Syndrome Day

Dear DSAW Family,

Happy March!! March is one of my favorite months of the year because March 21st is World Down Syndrome Day. While we celebrate the beautiful gift of Down syndrome every day, March 21st is set aside every year as an international holiday – the day the rest of the world celebrates with us. This year, we are making this celebration BIG, and we are celebrating all month long.

This month is all about awareness – raising awareness and acceptance of our amazing friends with Down syndrome. We know how incredible they are, now let’s shout it to the world!

We have some fun ideas and easy ways that you can raise awareness this month:

5th grade.JPG
  1. Raise awareness everywhere, every day!
     
    1. Change your cover photo to educate your friends and family about World Down Syndrome Day and how we are #morealikethandifferent. Click here to download the photo!
       
    2. Print out these Down Syndrome awareness cards to hand out at school, work, or local businesses. This is an easy way to spread awareness wherever you go! Click here to download the printable cards. 
       
    3. Share our special World Down Syndrome Day photo that we’ll post on 3-21. Stay tuned!
       
  2. Join us in rockin’ your crazy socks on March 21st! Crazy socks have become a symbol of World Down Syndrome Day – everyone is unique and beautiful. Use the hashtag #DSAWCrazySocks in your posts for a chance to be featured on our page!
     
  3. Raise money for DSAW's Statewide Parent's First Call Program with a Dimes for Down Syndrome campaign! Click here to download our printable label and tape it to a coffee can/other container. Place the containers at local businesses, your child’s classroom, or your office. The group that raises the most money will receive a pizza or donut party delivered by our Self-Advocates with Down syndrome. Send in your change, or start a fundraiser online (click here to visit the Dimes for Down Syndrome website).
     
  4. Find a DSAW World Down Syndrome Celebration near you!

Not only are we celebrating World Down Syndrome Day this month, but we are also launching the DSAW Statewide Parent’s First Call Program by sending materials to more than 400 medical professionals in Wisconsin, launching billboard campaigns, and unveiling our new DSAW Parent’s First Call Magazine.

When you raise awareness for Down syndrome in your local community, you are not only raising awareness for your child, neighbor, or sibling… but you are raising awareness for individuals with Down syndrome who aren’t yet born.

The termination rate for fetuses with Down syndrome is still well over 80%. Through DSAW’s awareness campaigns and the Parent’s First Call program, YOU can be an integral part of reaching expectant parents who may one day face a terrible decision.... expectant parents who may look back on your work, your joy, your hope… and decide that this life is actually very beautiful. YOU can make that difference for families and individuals with Down syndrome in Wisconsin.

So join us. Raise your voices for Down syndrome! Change your cover photo, rock your crazy socks, and participate in Dimes for Down Syndrome. Because at the end of the day, we are #morealikethandifferent.

 

Warmly,
Dawn  

 

Meet a DSAW Leader: Joy

Hi, my name is Joy Bosch, and I am the Advisory Board President for DSAW-Sheboygan and Surrounding Counties. I was born and raised in the rural Mayville area. I am married to John, and together we have 6 children, 7 grandchildren, and grandchildren #8 and #9 arriving in 2017.

When my nephew was born with Down syndrome, I searched the internet to find more information about it and came across DSAW's website. We learned all about how we could organize a walk to help raise awareness and monies for the community. A few family and friends got together and did just that -- we were delighted to raise over $3,000 our first year! Through the years, many of the walk's founding members are still involved, and we have continued to involve new community members that have helped a lot! I am proud to be part of DSAW-Sheboygan & Surrounding Counties, and hope you will consider getting involved too.

Looking Back on February 2017

Statewide Webinars

In February, we hosted two webinars for families around the state. We hosted the fourth and final part of our Speech Therapy Webinar Series, and also hosted a webinar on Financial Resources. Both webinars received accolades from parents and professionals who listened in. Didn't get a chance to listen? You're in luck - all of our webinars are recorded! Click here to access the recordings.
 

Chippewa Valley

Chippewa Valley hosted a Parent's Night Out and Meet and Greet with DSAW ED Dawn Nuoffer on Saturday, February 18th. Parents from across the area came out to the Green Mill for appetizers, drinks, and conversation! 

 

 

Fox Cities

The Fox Cities Chapter hosted an AWESOME Adult Night Out at the Escape Room in Appleton. And we made it through! The chapter also hosted its 2nd Annual Valentine's Dance for families. Thanks to Melanie Baeten for taking beautiful photographs!

This Spring, the Fox Cities Chapter continues to sponsor Spread The Word to End the Word campaigns around the Fox Cities area. Below is a picture from just one of these campaigns at the Taste of Oshkosh!

Finally, several of the Fox Cities Advisory Board Members attended the Down Syndrome Affiliates in Action Conference at the end of February. They listened to incredible speakers and came away with new ideas for programs, services, and events in the Fox Cities area. Stay tuned!

Green Bay

Our Green Bay Chapter hosted an Open Gym at Fusion Athletics on Friday, February 3rd, the monthly Kidz Town Playdate on February 4th, and held its first Bike Camp/Walk Meeting of the year on February 14th. Plans are coming along quickly for the rest of the year!

DSAW-Green Bay also hosted a Mom's Night Out on Sunday, February 26th. We had a great night of fun and laughter. Join us on the 4th Sunday of every month!

La Crosse

La Crosse's monthly Music Group was held on February 14th. This free class is open to children with Down syndrome ages 0 - 6 and is a great chance to be introduced to many music therapy techniques. Click here to learn more.

Wausau

DSAW-Wausau hosted its first event on Saturday, February 4th. The playdate was a huge success, and families are already excited for our next events! Join us for a Mom's Coffee Date on Thursday, March 9th to get to know other moms and help plan for future events.

 

 

 

 

Greater Milwaukee Chapter & DSAW State Headquarters

DSAW-Greater Milwaukee hosted its annual Valentine's Dance on February 11th. Participants had an amazing time dancing, play games, making crafts, and enjoying a delicious pasta meal! 

Young Leaders Bootcamp
Self-Advocates joined us for a fun month of Young Leaders Bootcamp taught by our friends at the Milwaukee Center for Independence. Our topic was Communication Management - Self-advocates learned all about how to communicate in personal and professional settings. Consider signing up for our March Bootcamp! 

Cooking with the Kiddos
We had a great time at Cooking with the Kiddos, so much so that we've started holding class twice per month!. 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 February. Every class involves a respite activity such as kickball or yoga, and then ends with an hour of employment-readiness curriculum. Self-Advocates are invited to join our class anytime. Consider joining us in March!

Tween Club
Tweens had a great time at February's Tween Club. We played games, made delicious treats like puppy chow, and had lots of fun playing the Wii! Many of our parents got to attend Parent's Night Out while their children had a night of fun. Join us in March! 

Parent's Night Out
Parents hung out at Club Paragon during February's Parent's Night Out. We had a blast! Join us in March!

Family Zumba
We had an AMAZING time at Zumba in February. Almost 15 children and adults joined us for the Saturday morning class. We have a volunteer Zumba instructor who makes the class fun for individuals of all ages and ability levels. Join us in March!

Family Movie Night
We had a blast watching Shrek together at our Family Movie Night. We brought sleeping bags and snuggled in for this family-favorite. Join us in March!

Meet a DSAW Leader: Jennifer

Hi! I am Jennifer Trustem, a board member on DSAW-Fox Cities. I became active with DSAW and eventually a board member in 2013 after the birth of our daughter Dana. Dana was diagnosed at birth with Down Syndrome. Dana has 3 amazing older siblings, Tanner, Cael, and Jensen, who are her biggest cheerleaders! Our family enjoys fishing, camping, boating, and anything else outdoors. I work part-time as a speech language pathologist and Ben is a sales engineer.

I first became involved with DSAW-Fox Cities by volunteering with the walk committee. Through this experience, I met a wonderful group of individuals. Not only did these people become my friends, but also an amazing source of information as they had older children with Down Syndrome. I then became interested in becoming a board member. I realized what better way to know the resources available to Dana and have an impact on future resources than becoming actively involved. My dream for Dana is for her to be a happy, healthy, independent, and productive/included member of society. This is why I volunteer on the board! Not only do I believe individuals with disabilities should have the same opportunities as those without, but they should be fully included.

I do not have an official title or role with our chapter, but I can say I do a little bit of everything. I have helped with the Down Syndrome Awareness walk, organized social events, and organized speaker events. My current focus in on providing those with Down Syndrome fitness opportunities in the community by working with Neenah YMCA. 

Self-Advocate Corner: Michelle's Poetry

Enjoy a collection of poems from one of our amazing Self-Advocates, Michelle. Michelle is currently completely an internship at DSAW, where we are working on learning office work and management, as well as working on her poetry. 

smile
god made you smile
around you take the heart
to pray god everyday you are born
god make you smile

trust
trust in yourself each child
be proud yourself
you are born god made you this way
just a way you are love yourself trust
in your heart

proud
be proud yourself when you feel proud
make you smile feel hug yourself
be proud be your best friend yourself D
proud you are

love
love special way just a way you are
love yourself inside in your heart feel
special you are born special

Looking Back on January 2017

2017 DSAW Leaders Retreat

In January, State Board Members and Chapter Advisory Board Members from around Wisconsin gathered in Milwaukee for a weekend leadership retreat. Not only did we have a LOT of fun, but we  brainstormed ways to bring innovative and needed programs and services to a location near you in 2017. We're excited to unveil all the amazing things coming your way!

Statewide Webinars

In January, we hosted two webinars for families around the state. We hosted the third part of our Speech Therapy Webinar Series, and also hosted a webinar on Transition Planning. Both webinars received accolades from parents and professionals who listened it. Didn't get a chance to listen? You're in luck - all of our webinars are recorded! Click here to access the recordings.

Annual Meetings

Our chapters hosted annual meetings around the state to communicate to members about 2016 successes and exciting plans for the new year. Click here for a summary of DSAW's successes in 2016!
 

Fox Cities

Ruby Z. enjoying the trampoline activities.

Ruby Z. enjoying the trampoline activities.

In addition to the annual meeting, Fox Cities hosted the Jump with a Buddy Event in January. This was a fun chance for individuals with Down syndrome to bring a typically-abled buddy or family members to enjoy Sky Zone Trampoline Park. Everyone had a blast!

La Crosse

La Crosse's monthly Music Group was cancelled in January due to inclement weather. However, please join us in February! This free class is open to children with Down syndrome ages 0 - 6 and is a great chance to be introduced to many music therapy techniques. Click here to learn more.

 

Greater Milwaukee Chapter & DSAW State Headquarters

Motor Skills 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!

Young Leaders Bootcamp
Self-Advocates joined us for a fun month of Young Leaders Bootcamp. Consider signing up for our February Bootcamp! February's topic is Communications Management and will be taught by professionals from the Milwaukee Center for Independence. Class is FREE!

Cooking with the Kiddos
We had a great time at Cooking with the Kiddos, so much so that we've started holding class twice per month!. 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 January. Every class involves a respite activity such as kickball or yoga, and then ends with an hour of employment-readiness curriculum. Self-Advocates are invited to join our class anytime. Consider joining us in February!

Tween Club
Tweens had a great time at January's Tween Club. We played games, made delicious treats like puppy chow, and had lots of fun playing the Wii! Many of our parents got to attend Parent's Night Out while their children had a night of fun. Join us in February! 

Parent's Night Out
Parents hung out at Club Paragon during January's Parent's Night Out. We had a blast! Join us in February!

Family Zumba
We had an AMAZING time at Zumba in January. Almost 15 children and adults joined us for the Saturday morning class. We have a volunteer Zumba instructor who makes the class fun for individuals of all ages and ability levels. Join us in February!

Family Movie Night
We had a blast watching Frozen together at our Family Movie Night. We brought sleeping bags and snuggled in for this family-favorite. Join us in February!

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. 

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!

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!

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/

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Down Syndrome Association of Wisconsin
Telephone: 414-327-3729
Fax: 414-327-1329
Email: info@dsaw.org

 

Headquarters Address
11709 W Cleveland Ave, Suite 2
West Allis, WI 53227

Headquarters Office Hours:
The DSAW office is open most days for programs and classes. DSAW staff is currently working in a mixture of in-person and remote work, so please call or email to set up an appointment before stopping by!

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