Down Syndrome Information: What Special Care Do People with Down Syndrome Need?

There is an extremely wide disparity among people with Down syndrome in the issues of cognitive or developmental delay. With very few exceptions, people with Down syndrome exhibit some developmental problems, but the range can span from almost imperceivable to severe, or profound.

The medical concerns associated with Down syndrome are also widely varied from person to person. While some people with the condition may require little more than their yearly physical, others require more frequent and in depth monitoring.

What follows is some information that may help to explain what some of the needs of people with Down syndrome may be. As each individual is unique, it is by no means a comprehensive list.

Down Syndrome Information
Information To Address Developmental Needs

Many people with Down Syndrome benefit from various therapies, most of which can be begun in early school or pre school age. Some of these therapies include speech and language therapy, occupational therapy, physical therapy.

Most people with Down syndrome experience some degree of cognitive or developmental delay. They will often benefit from either attending special or adaptive education classes in their school or by attending schools that teach the developmentally delayed. Many people with Down syndrome and their families also report getting great benefit from attending Montessori schools.

Once the child with Down syndrome has graduated or "aged out" of secondary school or its equivalent, most will then go to work. What is commonly meant by this, except in the cases of particularly high functioning individuals who are able to work at a job with little or no extra help or supervision, is that they will find or be placed in a job with some sort of assistance. In some cases, a person with Down syndrome may work in the community with what is called a "job coach." The job coach may be temporary or permanent, full or part time, depending on the need of the individual. In other cases, staff assistance at work may be provided by a residential agency.

In cases where the person with Down syndrome is not able to work in the community, day programming, supervised work environments with full-time assistance and supervisory staff, or some equivalent workplace is provided. These situations are generally funded by state government money.

For residential situations, there are several options as well. Most children with Down syndrome live with their families, although some attend residential schools. Most residential schools will continue to house and teach people with disabilities until they are 22 years of age, at which point they "age out" of special education services.

Some adults with Down syndrome continue to live with their families. Others live in their own apartments with varying degrees of assistance. Assistance options can range from none, to a "homemaker" who comes in once anywhere form once a day to once a week, depending on the need of the person, to help with some of the cooking and cleaning, to contracted staff assistance for a determined number of hours per week.

For individuals requiring full time assistance who do not live at home with their families, the most common option is the "group residence" setting. Group residences are houses in which two or more people with disabilities live together with staff on hand, usually around the clock. These houses are usually run by a human service agency, which receives its operational budget from state government money.

Down Syndrome Information
Information To Address Medical Needs

The first thing that should be done medically for a child who has been diagnosed with Down syndrome is an EKG. Approximately 40% of people with Down syndrome have congenital heart defects and it is important to ascertain as soon as possible whether or not the child does, in fact, have a heart condition, if so what the severity is, and determine the most appropriate course of treatment.

Neurological examination may also be indicated, due to the higher incidence of epilepsy in people with Down syndrome. Similarly, regular vision and hearing exams should be performed, as vision and hearing loss more prevalent in people with the condition.

Many people with Down syndrome have gastrointestinal problems and may require special diets and dietary monitoring to avoid constipation, diarrhea, abdominal pain and other GI symptoms.

The dietary restrictions may prove particularly important, and particularly challenging for the person with Down syndrome and those supporting him or her, as food consumption can often be particularly compulsive in nature for people with the condition. For this reason, obesity is also a common problem. Food intake monitoring may require especially vigilant attention.

More Information about Down Syndrome
Down Syndrome Information: What is Down Syndrome?
Down Syndrome Information: Diagnosis of Down Syndrome
Down Syndrome Information: Causes of Down Syndrome
Down Syndrome Information: Characteristics of Down Syndrome
Down Syndrome Information: Frequently Asked Questions
Down Syndrome Information: A Personal Account