Adult Issues

With adulthood comes new challenges for families and caregivers concerned about the health and quality of life of people with Down syndrome. Many may be addressed effectively when we gain an understanding of underlying facts and principles often unique to the syndrome. While the Down Syndrome Association of Minnesota may not have all of the answers, our staff and library can often provide you with valuable insights and proven solutions.

The Association is your resource; an entire organization devoted to helping you meet the individual needs of your family member, friend or resident with Down syndrome.

We maintain a Resource Lending Library offering video and audio tapes from national conferences, books and other materials addressing a wide range of topics related to Down syndrome. If you would like to know more, please give us a call at 800-511-3696 or email dsamn@dsamn.org. We are located in St. Paul, MN and our staff welcomes your inquiries.

After more than two years in the planning, a pilot study of the Down Syndrome Association of Minnesota Health-care Management Services was initiated and that has evolved into a formal DSAM program – the Adult Health Care Management Service. A nurse consultant, who brings us decades of experience working with adults with Down syndrome, has been retained by the Association. She is working with several families to help them define the health-care needs of their adult sons and daughters with Down syndrome. For more information click here.

We understand the challenges you face and support your efforts on behalf of adults with Down syndrome.

 

Kathleen Forney

Executive Director

Kathleen@dsamn.org

Adult Matters Listserv Launched!

DSAMN Adult Matters Group is the place to share announcements, resources, photos and discuss matters of interest to families and friends of adults with Down syndrome. The Adult Issues group will follow the mission of the Down Syndrome Association of Minnesota which is:

It is the mission of the Down Syndrome Association of Minnesota to provide information, resources and support to individuals with Down syndrome, their families and their communities.

Those with an adult (or soon to be) family member, friend or client are welcome to participate!

Health-care Management Service

Association Launches Adult Health-care Management Service

By David Forney

We have reached a very important milestone on our way to assuring the best possible health care for adults with Down syndrome in our region. The Down Syndrome Association of Minnesota has launched the new adult Health-care Management Service.

Available to all member families, the new service is on the very cutting edge of contemporary health care. Families who enroll in the program will receive a comprehensive assessment of the health-care needs of their sons or daughters with Down syndrome, a thorough consultation with a broadly experience nurse consultant and a complete health-care management plan. The plan, prepared for each participant, will address the full scope of each adult’s needs, providing observations that will span from basic health-care needs such as personal hygiene and nutrition on to serious and chronic medical conditions.

Each participating family will start by completing a health-care history for their family member with Down syndrome. After the history has been reviewed by our health-care consultant, each family will meet with the consultant to discuss concerns. Importantly, adult self advocates participate fully in the consultation – indeed each is the primary focus of the discussion. Based on that interview an individualized plan is finalized, complete with referrals to medical and psychosocial professionals.

The new service is provided by a registered nurse who has served for many years as the health-care consultant for Fraser Homes, one of our region’s largest providers of residential services for people with cognitive disabilities. Nancy brings our families an acute understanding of the health-care need of adults with Down syndrome and access to a network of other health-care professional experienced in treating their needs.

The Health-care Management Service is the result of more than four years of research and planning by our Adult Health-care committee. It was evaluated through a year-long trial conducted in 2008 among 15 Association member families.

Follow-up surveys and focus group interviews demonstrate that participants placed high value on both the experience and the plans they received. They told us they found Nancy to be a true professional who helped them gain a solid measure of control over the health-care needs of their sons and daughters. Importantly, they also commented that Nancy helped their self advocated gain a better understanding of the role they must play in their own health care.

The service is but the first of what the committee plans as a wide ranging program of health-care services including expansion of the number of qualified health-care professionals available to our families, a growing body of up-to-date health-care information and health and well-being workshops for self advocates and their families. Indeed, most recently, the committee met with a leading area hospital in a preliminary discussion of the establishment of an adult Down syndrome clinic.

If you would like complete information on the Health-care Management Service, please contact the DSAM office by phone (651) 603-0720/(800) 511-3696 or email kathleen@dsamn.org or download the brochure: Health-Care Management Service Brochure.

Mental & Physical Health

Adult Health Care

DSMIG Health Care Guidelines

Depression in Adults with Down Syndrome

Celiac Disease & Down Syndrome

Articles & Links of Interest

If People with Down Syndrome Ruled the World

Self Talk

The Groove

The Pace

Stubborn is as Stubborn Does

Wilderness Inquiry – Gateway to Adventure Program

Institute on Community Integration

Down Syndrome: Health Issues – News & Information for Parents & Professionals

Partners in Policymaking - Program through the Minnesota Governor’s Council on Developmental Disabilities