Down Syndrome Association of Wisconsin Down Syndrome Association of Wisconsin Down Syndrome Association of Wisconsin Down Syndrome Association of Wisconsin  

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A Parent's Guide to the Genetics of Down syndrome
by Sarah Hartway, MS, RN  

Down syndrome is a genetic disorder, occuring when an individual has all or part of an extra copy of chromosome 21. Parents of children with Down syndrome are often confused by the term genetic disorder because they associate the term with inheritance but have also learned that Down syndrome is not typically inherited. These parents may have questions about the nature of chromosomes, how Down syndrome occurs, recurrence risk and more. This article attempts to address many of those common questions.

A Guide to College for Students with Disabilities 

Young people with disabilities now have opportunities to attend post-secondary education institutions. They are allowed to be students studying a wide range of subjects, without limitation or discrimination. Colleges and universities, like elementary and secondary schools, need to legally follow the mandates of Section 504.

The Family Resource Connection

The Family Resource Connection was established in 1997 by a group of community members seeking a vehicle to provide comprehensive, community-based services for families in Northern Wisconsin. During a year-long feasibility study, the core group investigated principles of family support, models for family resource centers and assessed the needs of Northwoods residents. A business plan was developed encompassing all that was learned and submitted to Sacred Heart-Saint Mary's Hospitals, Inc., with a request for funding to open the Family Resource Connection. Saint Mary's Hospital's administration granted the request for start-up funds and also became the fiscal agent to the newly formed family resource center.

Easter Seals Southeast Wisconsin

Easter Seals Southeast Wisconsin provides exceptional services to ensure that all people with disabilities or special needs and their families have equal opportunities to live, learn, work and play in their communities.



Parent to Parent Wisconsin

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.

Specs 4 Us - Superior precision eyewear for children who are special

SPECS4US has designed a frame specially formatted to fit children with Down syndrome. With a pair of Erin's World frames your child will no longer be constrained from their eyeglasses. They will be able to explore the world freely and clearly without wearing glasses that are too big or are constantly slipping down their noses. These frames are made with your child's unique needs in mind and solve the problems that regular eyeglasses never could.

Wisconsin Sensory Integration Therapy Resource Guide (PDF)

This is a partial listing of therapists and centers providing sensory integration therapy in the state of Wisconsin. Most often therapists providing sensory integration services are occupational therapists with additional training and experience in sensory integration techniques. The information contained on this list does not constitute an endorsement. Contact therapists and centers directly for more information about costs, insurance, Medicaid, and for therapy specific information. Request therapists with expertise in sensory integration. Information current: 6/08

Universal Checklist for Identifying Infants and Toddlers Eligible for Early Intervention

The Tracking, Referral and Assessment Center for Excellence (TRACE) has released a new practice guide entitled Universal Checklist for Identifying Infants and Toddlers Eligible for Early Intervention by Carl J. Dunst, Carol M. Trivette, & Glinda Hill. The guide describes the development and use of a universal checklist designed to be used by primary referral sources for identifying infants and toddlers who may be eligible for early intervention. For more information and to access the practice guide click here.

Down Syndrome Clinic of Wisconsin - Children's Hospital

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

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, DS children will benefit from physical, occupational and speech therapy in their first months and years. But all of this comes at a cost.

While your personal health insurance may provide coverage, Katie Beckett (named after a young girl in Iowa when the program started under the Reagan Administration) is part of Medicaid. Children who are not eligible for other Medicaid programs because the income or assets of their parents are too high may be eligible for Medicaid this way. Our experience shows us that most DS kids qualify for Katie Beckett benefits, so make sure to contact your local Katie Beckett representative to determine your own eligibility.

Birth to 3 - Wisconsin's Early Therapy Intervention Program

This 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.

A federal law, the Individuals with Disabilities Education Act (IDEA), provides a framework for a comprehensive program and coordinates developmental, health and social services within the community.


Estate Planning Resources - Financial

While not affiliated directly with DSAW, the following individuals have provided valuable advice to several members of the organization regarding their long term financial and estate strategies:

Rick Boyd, President
Financial Advisor / Special Care Planner
HUB Financial Group LLC, Brookfield
(262) 432-7213;

Harry Dorman, LUTCF
Financial Advisor / Special Care Planner
MassMutual Financial Group, Appleton
(920) 886-9469;

David Giddings, CLU
Financial Services Representative / Investment Advisor Representative
RC Insurance Services, Inc., Hartland
(262) 367-8611;

Gene LaRock, CLU, ChFC
Financial Advisor
Northwestern Mutual Financial Network, Eau Claire
(715) 839-9692;

Robert S. Johnston, LUTCF
Sr. Financial Services Representative, Financial Advisor
and Princor Registered Representative - Special Needs Planning LLC; (414) 203-1932  

Lori Troyer
Registered Representative, Member NASD, SIPC
Woodbury Financial Services, Hartland
(262) 367-6656;

Gregory Zwick
Financial Advisor
Financial Network Investment Corporation, an ING Company, Wauwatosa
(414) 258-0806; 

Rick Talbert
Insurance Professional
M4 Financial Partners, representing Mass Mutual, Brookfield, WI

Estate Planning Resources - Legal

Nancy L. Shue, Attorney 
Storm, Balgeman, Miller & Klippel, S.C.
1011 N. Mayfair Road, Suite 200
Wauwatosa, WI  53226

Tel. 414.453.8500
Fax  414.453.0604

Mark J. Rogers, Attorney
Angermeier & Rogers, LLP
312 East Wisconsin Avenue, Suite 210
Milwaukee, WI 53202
Contact Mark Rogers 

Tel. 414.289.9200
Fax 414.289.0664

Guardianship Resources - Legal

Nancy Shue
Storm, Lageman, Miller & Klippel, S.C.
1011 N. Mayfair Road, Suite 200
Wauwatosa, WI 53226
414-453-8500 phone
414-453-0604 fax website

Angela Canellos
631 N. Mayfair Rd
Wauwatosa, WI 53226

Rock Pledl
Courtney, Pledl & Molter, S.C. is a law firm in Milwaukee Wisconsin
1110 N. Old World Third Street, Suite 215
Milwaukee, WI 53203

John Stocking
Petrie & Stocking
111 East Wisconsin Avenue
Suite 1500
Milwaukee, WI 53202
(414) 276-2850

Wisconsin Department of Health and Family Services (DHFS)

Listing of services in Wisconsin for those with disabilities. Also check for all services DHFS offers.

Wisconsin First Step

Statewide information and referral service dedicated to helping families and professionals find resources for children birth to 21 years with special needs. Call their hotline at 1-800-642-7837 to find the closest regional center for CSHCN, Children with Special Health Care Needs.

Family Support Program

In-home support for families with children who have severe disabilities. 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.

Special Education in Plain Language

A user-friendly interactive handbook on Special Education Laws, Policies and Practices in Wisconsin.

WISCONSIN FACETS - Wisconsin Family Assistance Center for Education, Training & Support, Inc.

  • Informs and instructs parents how to obtain appropriate education
  • Works to improve education results
  • Helps resolve issues between families and schools or other agencies
  • Provides a critical resource to connect families to community resources

ARC Milwaukee/ARC Wisconsin

Since 1949, ARC Milwaukee has worked to improve the quality of life for individuals with developmental disabilities and their families. ARC facilitates an individualized Lifelinks care plan that enables persons with disabilties to live safely and successfully, including medical, legal, financial, residential, recreation, employment, transportation and transition needs. Contact the ARC at (414) 774-6255. Not from the Milwaukee area? ARC Wisconsin, based in Madison, can assist. (608) 251-9272.

A.R.C.H. Medical Center

A.R.C.H. Center stands for Autism Recovery and Comprehensive Health Center. A.R.C.H. Center is located in the Franklin Industrial Park in Franklin, Wisconsin. We are 10 minutes south of the airport and 2 miles west of I-94 off of the Ryan Road Exit.

Our mission is to provide an all inclusive biomedical treatment for adults and children. Our treatment provides a full comprehensive continuum of care. We offer greater changes for recovery from Autism, Autoimmune, Nutritional deficiency and degenerative brain diseases. Our mission is to show our clients the road to better health. Services provided by A.R.C.H. are not limited to Autism. We also treat conditions that have not responded properly to conventional medication.

Student Accessibilty Center (SAC) - UW Milwaukee

Located at the University of Wisconsin-Milwaukee, this organization provides services to students with physical, learning, sensory or psychological disabilities that affect a major life activity.

For more information, e-mail

Bridges4Kids News Digest

Free online weekly newsletter regarding issues in special education. Get the latest weekly updates on:

  • State and National education news
  • Special Education
  • Disability Issues
  • Legislative Updates
  • Resources, conferences & much, much more!


Therapeutic Riding Services - Maria Rozek, MSW
NARHA Registered Instructor
Call for a free initial phone consultation (414) 628-2169

LifeStriders Therapeutic Riding Center

LifeStriders Therapeutic Riding Center offers fun and therapeutic recreational activities for children, adults and seniors with many types of disabilities in the greater Milwaukee and Waukesha area.

LifeStriders is certified through the North American Riding for the Handicapped Association. Our volunteers and Staff includes Physical Therapists, Educational Psychologists, Counselors, OT's, Rehabilitation nurses, Adaptive PE teachers and caring volunteers that assist with each lesson.

We are currently working with a number of clients with down syndrome who enjoy the physical activity and challenges that therapeutic riding has to offer.
Please visit our website at or call us at (262) 565-6124 for more information.

Midwest Therapeutic Riding Program, Inc.

1117 North Britton Road
Union Grove, WI 53182
(262) 878-2000
Stephanie Kubarth, Director

Hippotherapy and therapeutic horseback riding for children with physical, cognitive and/or emotional disabilities

HealthReach Rehabilitation Services, Inc.

11035 West Forest Home Avenue
Hales Corners, WI 53130
(414) 529-4141

HealthReach Rehabilitation Services is truly a company where care comes first. As Wisconsin's premier provider of comprehensive and innovative physical, occupational and speech therapy services, we're committed to helping all individuals achieve the highest possible level of physical function and quality of life.

Rhapsody Arts Center
The Rhapsody Arts Center in Verona, WI offers music therapy especially for individuals with Down syndrome and Autism. 

The Southeast Regional Center for Children and Youth with Special Health Care Needs

The Southeast Regional Center for Children and Youth with Special Health Care Needs (formerly known as the Special Needs Family Center), is one of five Regional Centers in the state of Wisconsin. They serve families and providers who care for children and youth birth to 21 years of age with special health care needs. Examples of special health care needs include cerebral palsy, cancer, diabetes, autism, severe asthma, developmental delay, hearing loss and many others. We serve families and providers in the following counties: Jefferson, Kenosha, Milwaukee, Ozaukee, Racine, Walworth, Washington, and Waukesha counties. 

Access Music Therapy in Duluth, MN provides music therapy services for families in Northwest Wisconsin. 

After School Respite Programs

·  Corporate Guardianship

·  Summer Respite Camps

·  After School Respite Programs

·  Recreation

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