"We Absolutely Couldn't Ask for More!"

Does your family need one-on-one support for your loved one with Down syndrome? Do you need help with IEPs, inclusion, or speech? Are you struggling with behavior problems and need a custom solution? Do you need to find respite care? Does your loved one need help securing transportation, housing, caregivers, or employment? Would you like to develop a 5- or 10-year plan for your loved one to help them reach their goals?

DSAW-Family Services can help with ALL of this, and more! DSAW-FS provides one-on-one services to individuals with Down syndrome and other special needs and their families, helping individuals take their rightful place in the community and achieve their full level of independence. Whatever obstacle you are facing, DSAW-Family Services can help!

DSAW-FS has been working with Kathryn for a couple of years. She has received daily life-skills training, job coaching, and one-on-one support to help her achieve her dreams. Kathryn's mom, Julie, says that with DSAW-FS, Kathryn "has accomplished so much and her success has been wonderful!" DSAW-Family Services has matched Kathryn with a support worker that has been life-changing for Kathryn and her family. "It is so important to us to have a long-term and REAL relationship with our provider...DSAW-FS has provided Kathryn with exactly what she has needed, when she needed it."

With the help of DSAW-Family Services, Kathryn is living a fulfilling and active life in the community. She has two jobs, she volunteers at DSAW, is involved in Project Search, and participates in Special Olympics. Julie says that she "absolutely couldn't ask for more!"

When you support DSAW, you support the services that have helped people like Kathryn thrive. Would you consider giving others an amazing life this holiday season? By donating to DSAW, you can.

Warmly, 
Dawn Nuoffer
Executive Director
Down Syndrome Association of Wisconsin 

PS - Only 5 days left for your donation to qualify for a dollar for dollar match thanks to a generous donor. Make your donation today!

Where to Start: Resources

WISCONSIN RESOURCES

Down Syndrome Clinic - Children’s Hospital of Wisconsin 

The Down Syndrome Clinic is committed to improving the health and well being of children and adults with Down syndrome, which may include complex issues. This requires a comprehensive, multidisciplinary health care approach. The DSCW is connected with a statewide network to assist families in need.

Birth to Three

Birth to Three is Wisconsin’s early intervention program for infants and toddlers with developmental delays and disabilities. Through it, your child will receive (in most cases) in-home physical, occupational and speech therapy depending on his or her needs, often at little-to-no cost to your family. 

DSAW Parent’s First Call

For new and expectant parents of babies with Down syndrome, we offer up-to-date resources (Expectant Parent Packs and New Parent Welcome Baskets), and the opportunity to connect with other parents who have had similar experiences.

1-866-327-3729

Katie Beckett Program Supplemental Insurance 

Children born with DS often experience medical complications at birth, many of which today are corrected with routine procedures. In addition, children with DS will benefit from physical, occupational and speech therapy in their first months and years. The Katie Beckett Medicaid program can cover costs that insurance plans sometimes will not.

 

Family Support Program 

The Family Support Program offers in-home support for families with children who have severe disabilities. It also offers information and help in finding service programs and community resources, some funding to purchase necessary goods and services unavailable elsewhere and links to other families to build a support network.

DSAW Member Grants and DSAW Meal Assistance Program

DSAW offers Member Grants for DSAW Members to help offset the cost of items or services that can benefit the quality of life and development of a person with Down syndrome. In addition, for families who are experiencing an extended hospital stay at Children’s Hospital of Wisconsin in Milwaukee, we offer meal vouchers for family members

Wisconsin First Step 

The mission of Wisconsin First Step is to assist parents in finding resources for their children with special needs. They serve children and youth from birth to age 21 who have physical, cognitive, or mental health challenges.

1-800-642-7837

WI FACETS

The mission of WI FACETS is to provide and broaden opportunities that enhance the quality of life for children and adults with disabilities and their families, with emphasis on support for underserved families in the community.

Other Resources

DSAW has a large collection of international, national, and Wisconsin-specific resources on a variety of topics related to Down syndrome. To learn more, visit our website.

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NATIONAL DOWN SYNDROME RESOURCES

 

National Down Syndrome Society

The National Down Syndrome Society (NDSS) is the leading human rights organization for all individuals with Down syndrome. NDSS envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities.

National Down Syndrome Congress

The mission of the National Down Syndrome Congress (NDSC) is to provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome. The vision of the NDSC is a world with equal rights and opportunities for people with Down syndrome.

Global Down Syndrome Foundation

The goal of the Global Down Syndrome Foundation is to significantly improve the lives of people with Down syndrome through Research, Medical Care, Education and Advocacy. Global works to educate governments, educational organizations and society in order to affect legislative and social changes so that every person with Down syndrome has an equitable chance at a satisfying life.

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WISCONSIN DOWN SYNDROME RESOURCES

Wisconsin Upside Down

Wisconsin Upside Down is dedicated to enhancing the lives of individuals with Down syndrome. The mission of Wisconsin Upside Down is to offer Down syndrome Advocacy, Education, Awareness and Support to families of individuals with Down syndrome and the community.

 

Madison Area Down Syndrome Society

The mission of the Madison Area Down Syndrome Society, Inc. is to provide support to individuals with Down syndrome and their families while advancing awareness, respect and opportunity.

GiGi’s Playhouse

GiGi’s Playhouse Down Syndrome Achievement Center’s mission is to change the way the world views Down syndrome through national campaigns, educational programs, and by empowering individuals with Down syndrome, their families and the community. There are playhouses located in Milwaukee and Madison.

Gettin’ Down Central WI

Gettin’ Down Central WI’s goal is to educate and bring families and the community together to learn acceptance and communicate knowledge. They make new friends, while providing support, sharing resources and information.

How Schools Can Be Inclusive To Individuals With Down Syndrome And Other Special Needs

When it comes to educating individuals with special needs, DSAW advocates inclusion as the first option. Special education services come in many different forms, however, schools are required to consider the general education class before any other setting. Here are some tips for schools, teachers, and parents to help with the inclusion process.

School Environment

• It's important to keep a positive attitude throughout the school. Place values on diversity, be flexible, and practice positive problem-solving with students.

•Teachers should modify assignments when they are too difficult for children with special needs. They should also aim to model respect, as well as encourage friendships in the classroom. The different learning abilities and styles within the class should also be considered. Teachers should teach in a way that allows all children to understand and participate. 

Making Friends

•Encourage children to participate in activities where he/she can meet children his/her same age with different abilities. Make sure to support the development of friendships with classmates.

•Provide many opportunities for children with Down syndrome to socialize in a peer group with similar levels of intellectual disability. It is important for children with disabilities to have friends who are similar to them both in and outside of school.

•Similarly, it is good for friendships with non-disabled peers to carry on outside of school. This will help improve understanding and support.

Parents

•Keep in mind the power of role models. You want your child to feel that they are part of their community. It will help if they have strong influences who can set good examples and be someone they can look up to.

•Set up meetings with teachers, therapists and others to discuss the goals, expectations, and future placement preferences you want to plan with your child.

Need Help?

•Schedule a Peer Sensitivity Training at your school! DSAW can help teach your child's classmates about what Down syndrome is, what it isn't, and how to be a good friend to someone with Down syndrome.

•Watch our IEP Webinar to learn more about advocating for more inclusion for your child.

•Do the teachers at your school want to learn more about teaching individuals with Down syndrome? They can schedule a teacher in-service to learn the latest techniques.  

•Need one-on-one support managing the relationship with your teacher or school district? Contact DSAW-Family Services to set up a Roadmap Session.

Resources:

http://www.pbs.org/parents/education/learning-disabilities/inclusive-education/making-inclusion-a-reality/
https://www.down-syndrome.org/practice/370/
http://www.ndss.org/Resources/Education/Implementing-Inclusion/

Birth Announcement

It can be hard to know how to announce the birth of your baby to friends and family. Take a look at our sample birth announcement to give you some ideas:

Hello everyone! We are happy to report the birth of Evan Michael. He joined us yesterday at 2:36pm. Mom is recovering well and is likely headed home tomorrow. Evan weighed in at 7 lbs 1 oz and was 19.5 inches long.

We’d also like to share some additional news we learned shortly a er he was born - Evan has been diagnosed with Down syndrome. The last day has been an emotional rollercoaster but we are all doing well. After spending some me learning more about DS, we know that Evan will be a wonderful addition to our family and we are looking forward to watching him reach his own milestones just as his sister has done herself.

We realize that our announcement may prove a little awkward for some - some we’ve told in person have a hard time knowing what to say. “Congratulations” works just fine! The past 24 hours have made us realize how lucky we are to have the support of many caring family and friends and we look forward to sharing Evan with everyone.

If you’d like to learn more about Down syndrome, we encourage you to check out online resources, such as the Down Syndrome Association of Wisconsin or the National Down Syndrome Society. After reading about DS, we hope you’ll know, as we do, that Evan can and will have an amazing life.

We promise to report back soon with pictures and an update!! 

A Guide to IEPs

Your child with Down syndrome will experience 18 to 21 years of school. Ideally, school should help your child not only meet key developmental and social goals, but should also prepare them for life after school is over. In order to make sure your child's goals are met, it's important to properly utilize their IEP.

The Individualized Education Program (IEP) is a legal document that creates an educational plan. It spells out your child's learning needs, the services the school will provide and how progress will be measured. At first, it can be intimidating and confusing, but it doesn't have to be! 

Take a look at this IEP guide to help you create goals, work with your team, and more. This guide was created from a Webinar about IEPs that DSAW hosted in the fall of 2016. If you'd rather watch the webinar recording, click here.

Purpose of  Special Education:

1. Prepare your child for a job

2. Prepare your child for college or technical school

3. Prepare your child to live as independently as possible

Remember your specific purpose for school. If you're asking big things of your school, make sure your requests match up with the needs of your child. 

What to do prior to your IEP meeting:

1. Ask for a draft of the IEP.

2. Ask if the school intends to change placement.

3. Ask if the school intends to reduce services.

If you're not comfortable with the answers you receive, you can re-convene the meeting.

4. Create a collaborative infrastructure and state your top 5 most important goals.

The Pages Of Your IEP: 

I-9

This page is often overlooked, but it is the most important page. Have your school send you the IEP ahead of time so you can read it through beforehand. Don't skip over the I-9 and don't run out of time for it during the meeting. Reading through your IEP beforehand will help you manage your meeting time. You'll be prepared and will be able to ask the most important questions.

The I-9 describes the school's resources to help your child reach their goals. The goals justify the services. Everything that is included in the IEP needs to be there for the sole purpose of leading towards your goals. 

I-3

This page defines the purpose of the meeting and describes who can attend. You can invite anyone you want to attend meeting, but you should let the school know in advance. The local education agency (LEA) is in charge and has the ultimate authority. You will ask the LEA your bigger questions. When a school transition is expected (middle to high school) be sure to ask staff from both schools to attend.  

I-4

This page is the PLOP (present level of performance). It defines your child's present level of performance. Ask for this information prior to the meeting and read it prior to meeting so that you can bring your questions with you. 

I-5 

This is the special factors page. It asks the question, "Does the student's behavior impede his learning or the learning of others?" If yes, the IEP must include behavior interventions/ strategies. Many will say the only way to get the behavior interventions and strategies correct is to do a formal functional behavior assessment and formal behavior intervention plan (FBA and BIP) to find out why the child's behavior is preventing them from learning.

I-6 

This page captures all the goals for your child. Achieving a goal is the justification for services listed in the I-9. A lack of budget alone is not a valid justification for not providing services. The only reason a school can have for not providing services is if they aren't needed to reach the child's goals. Goals are to be individualized. It is OK for parents to introduce parent goals before and during the IEP.

I-7 

This page determines if the child should take district wide tests or alternative (significant cognitive disability; instructed using common core essential elements; student requires extensive and individualized instruction).

I-8 

This page includes a transition plan for children who turn 14. In Wisconsin, the transition plan must be in the beginning of the IEP when the child turns age 14 during the IEP year. If you're looking for help developing a transition plan for your child, we recommend contacting DSAW-Family Services, our transitions experts.

Legal documents:

LRE:  Stands for "least restrictive environmental". It means that, to the greatest extent possible, a student with a disability should have the opportunity to be educated along with non-disabled peers. 

FAPE: Stands for "Free and appropriate public education". Your child should be able to do the same things other kids with typical abilities can do (from yearbook to choir to golf team). If there are not try outs, the school should make available the supports to allow your child to participate with their typical peers.

FAQs:

What should I do for my child in the birth to 3 age group?

At least 90 days prior to IEP meeting you need to provide your school with a packet of information. An occupational therapist will most likely be required. The strategy should be to have your birth to 3 providers set up goals for your child. 

What should my age 4 IEP goals be? 

1. Social goal (inclusion)

2. Speech articulation (speech)

3. Speech language (speech)

4. Staying on task (behavior)

5. Gross motor (PT)

6. Fine motor (OT)

7. Academic (colors, shapes, etc.)

What should my child know going into 1st grade?

Behavior is one of the biggest challenges our friends with Down syndrome have. At age 6 your child should be able to:

1. Sit at a table for 3-5 minute

2. Wait at least one minute

3. Comply with single step directions

4. Transition from high preference activity to low preference activity

5. Tolerate boredom

6. Use a quiet voice

7. Keep their hands to themselves

8. Perform a table task

9. Show flexibility

10. Show sharing skills

11. Stay close (Lots of kids with Down syndrome are "runners" and it is important that they know to stay close when they need to.)

How does my IEP transfer across state lines/ school districts?

Every IEP has a common format and 90% look alike. Every school has a different personality, which accounts for 10% that is different. Some things are delegated to schools. Services are provided to students that attend private schools. Some things are based on interpretation of law suits. FBA is an evaluation and requires parent authorization. There are big differences in programs for 3 and 4 year olds. If you had a good IEP at your old school, you should be able to get the same goals at your new school. It would be hard for the new school to argue against good plans. 

How are homebound services different from early childhood (age 4)?

Homebound: You stay at home and a teacher will come visit, check your work, give assignments, and answer questions. This is a type of independent study. In most school districts you are still a part of your school because this is a temporary arrangement. You will return to your school when you are able to. Usually this is offered to students who are ill or having problems at school that need some time away from school. A homebound student might get 2 hours per week of a special education teacher's time. The expectation is that parents really do the teaching.

Early Childhood: A student in a robust early childhood program might get 10 hours per week of support from a special education teacher, therapists, and paraprofessionals. You will get more outside, professional help if your child is at school.

How do I write a good goal?

Parents need to understand the goals. Incorporate the baseline/present level into the goal preceded by the word increase and you won't fail to write a good goal. For example: John will increase his speech intelligibility from his present level of 60% understandable to unfamiliar listeners with context to 80% understandable to unfamiliar listeners with no context.

My child is 12 years old. How should I prepare for a high school IEP?

1. A child will age out of most child care programs at this time (start searching for child care when your child turns 11).

2. Decide how important inclusion is to your child (there is less of it in middle school and high school so you might have to start advocating more for that).

3. Spend a day shadowing a self-advocate.

4. Spend a day in high school.

5. Change your mindset to transition.

6. Attend a transition conference.

7. Talk to some parents with kids in high school.

How does the IEP change over time? 

What is the perfect transition?

When the last day of school is no different from the first day after school.

What should our goals be for age groups?

6-16: social, speech, behavior, personal safety, reading, writing

17-18: social, speech, behavior, recreation, employment, personal safety, college prep

19-25: social, recreation, employment, personal safety, independent living

What is the best way to measure progress on a goal?

Tallied observations sent home to the parents daily. Be conscious of the time and cost of collecting data; perhaps you really only need data from the school one day per month. Other measures include work samples, anecdotal observations, and informational observations. 

What is the difference between Facilitated IEP and Mediation?

Facilitated: DPI pays for someone to facilitate your IEP. In this case, many parents feel their voice was heard and the IEP was fair.

Mediation: A process to reach agreement with the help of a mediator. This gives you the ability to ask open ended questions and get answers. 

We hope this guide has helped you feel prepared for your upcoming IEP! If you're looking for this information in a more interactive format, consider watching the recording of our IEP Webinar. Want to schedule a consultation for individualized help with you IEP planning? Contact DSAW-Family Services!

Questions About Birth to Three

What is Birth to Three, and what is its purpose?

Birth to Three is Wisconsin’s Early Intervention program. The concept of “early intervention” is quite simple. If a child with a developmental delay receives proper help early on, problems in the future may be minimized. A child, his/her family, and the educational system will benefit by the reduced need for long-term intervention throughout the child’s school years.

What kinds of things will my child with Down syndrome do in Birth to Three?

Your child will participate in a variety of activities planned by licensed therapists, teachers, and nurses. The setting for these activities -- which are designed to provide physical, occupational, and speech therapies as needed -- may include regularly scheduled home visits, play group activities, individual therapy at home, daycare or hospitals, or other combinations that work for your family. You child’s record will be kept confidential.

Will I have any say regarding my child’s participation in any of these therapies?

Absolutely! After eligibility is determined (and most children with Down syndrome usually qualify), the Individualized Family Services Plan (IFSP) is written with help from the parent(s) and services begin.

When should my child start Birth to Three Services?

Some families choose to enjoy their babies and adjust to life with a new little one before jumping in. Others choose to start therapy right away. Ideally, a baby would start therapies within the first 8 weeks of life if that works in your family schedule.

Is there an age limit to receiving Birth to Three services?

The age limit is newborn to three years. 

Types of Therapies

Pediatric Physical Therapy (PT) is the treatment of children with physical disabilities by a licensed professional physical therapist who is educated and trained in the diagnosis and treatment of children with physical disabilities. The goal of PT is to improve care and provide a treatment program to obtain or restore the highest level of independence and function in quality of movement, walking, strength and endurance, gross motors skills, posture, positioning for functional skills, coordination, and mobility for the child with the disability.

Pediatric Occupational Therapy (OT) is the treatment of children with physical, emotional, and/or intellectual disabilities from birth to 21 by a licensed occupational therapist educated in a variety of diagnoses and therapies for such children. The goal of OT is to help make learning possible by helping children develop the underlying skills that will lead to independence in personal, social, academic, and vocational activities. This includes remediation of difficulties the child may encounter with ADLs (Activities of Daily Living) such as dressing, grooming, feeding, etc.

Pediatric Speech Therapy addresses the child’s complete communicative needs. This often begins with the development of non-verbal communicative skills such as attending to the speaker and the activity, taking turns, and making appropriate eye contact. It is designed to help with speech disorder, often referred to as articulation or phonological disorders - problems with the way sounds are made or how sounds are sequenced to form words; oral-motor problems resulting in difficulty producing speech sounds; and delays in feeding skills. A speech-language pathologist is a specialist in the normal development of human communication. The Certificate of Clinical Competency (CCC) assures you that a speech-language pathologist has been qualified to provide clinical services by the American Speech-Language Hearing Association (ASHA). 

For more helpful tips for new and expectant parents, check out the digital version of the Parent's First Call Magazine.

This blog post is sponsored by Dries Painting. Thank you for your support!

Preventing Summer Slide

We all look forward to summer vacation, but what happens when we let our brains take a break from school? Have you ever noticed your child struggling at the beginning of a new school year? It’s easy to forget what you’ve learned when you haven’t been actively using those skills. This is especially true for our friends with Down syndrome and other special needs. To help you, we've put together 9 ways to prevent summer slide.

1. Set Yourself Up For Success.

It’s important to keep up a routine throughout the summer months. Of course, your child won’t have the usual school work load, but you want them to still be engaged in learning. If practicing reading, math problems, or speech becomes a habit, their skills will show great improvement. Hopefully, these activities can also be something your child looks forward to. Ask your child keep a journal each day about all the things that they have learned. Writing is a great way to exercise the mind.

2. Make Reading a Priority

Reading is one of the most common areas of decreased skills from one school year to the next. Set goals with your child by making a list of books they would like to read over the summer. Research has been done on developing reading skills, and it has been shown that six is the magic number when it comes to creating a summer reading list (Scholastic). If you choose six books for your child that aren’t too heavy, but aren’t too light, this can prevent their abilities from slipping. Plan a fun trip to the library and let your child pick out books that spark their excitement!

3. Build a Support Network of Other Parents

Having a solid support group does wonders. Bounce ideas back and forth with other parents and make it a team effort. You can also plan group activities with other families! A great way to meet parents of children with special needs is at a DSAW's Parent's Night Out. They are held regularly across the state. 

4. Find Education Everyday.

Encourage learning in everyday life and motivate your child to practice their skills consistently. On days you don't have anything specific planned, there are still ways to help your child exercise their minds. If you think about it, education can be found in any situation. Even activities such as cooking can help your child learn. Cookbooks involve reading and math! Taking a summer road trip? Listening to an audiobook along the drive can be a fantastic way to incorporate learning.

5. Summer Camps

There are always a number of specialized camps available during the summer months. Camps specifically for children with special needs include:

•Lions Camp 

•Shepherds College 

•Easter Seals Camp 

•Badger Camp 

•iCan Shine Bike Camp 

•Wisconsin Youth Leadership Forum 

•DSAW Respite Day Camp 

6. Summer Programs

Your child's school or local public library can be a wonderful resource. They often have summer programs that your child can be apart of. Keep in mind, you can also petition to have Extended School Year Services (ESY) included in your child's IEP. Click here for a guide on ESY. 

7. Recreational Opportunities

Consider looking for recreational activities to keep your child's mind and body active. Physical activity takes a lot more brain power than one might expect. Consider checking out Special Olympics, Miracle League, and more! 

8. Supplemental Therapies

After a full school year of progress in PT, Speech or OT, nothing is more deflating than losing skills due to lack of therapies over the summer. If possible, enroll your child in supplemental summer therapy! DSAW-Fox Cities is offering speech, OT, and behavior therapy this summer, and DSAW-La Crosse is offering access to speech therapy. If summer therapy is cost prohibitive, consider applying for a DSAW Member Grant. We also recommend asking your current therapists for lists of activities that you can be doing over the summer.

9. Don't Forget About Behavior and Social Skills

It may be easier to stay home over the summer, but nothing will improve your child's behavior and social skills like exposure to new people and new experiences! Organize playdates (with typically-abled friends too!), visit new places, and always work on appropriate social behavior. Summer is a great time for experiential learning.

Learning doesn’t have to go on summer vacation, and it definitely doesn’t have to be boring. There are many ways to make practicing educational skills fun for your child!

Sources:

http://www.scholastic.com/parents/resources/article/developing-reading-skills/three-ways-to-prevent-summer-slide

https://www.cli.org/blog/5-tips-for-preventing-summer-slide-2/

http://blogs.edweek.org/edweek/education_futures/2016/06/9_tips_for_preventing_the_summer_slide.html

https://littlescholarsllc.wordpress.com/10-ways-to-prevent-summer-slide/

This blog post sponsored by Cardinal Capital Management

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! 

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

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/