Due to the spectrum of intellectual disability that a person with Down syndrome may experience, what is needed in the home can vary widely. Leslie Kenny, who works in the Family Support Program of the United Arc in Greenfield, Mass., said that the age of the individual with Down syndrome can also be a factor.
The United Arc provides an array of services for individuals of all ages with developmental disabilities as well as their families. “What tends to be the most difficult (in the home setting) is the greater tendency for people with Down to develop Alzheimer’s as they age,” said Kenny.
However, reflecting on the needs of children with Down syndrome, Kenny said that “it is first and foremost that families realize they (the child with Down) need a lot of opportunity for stimulation while keeping the home environment safe at the same time.”
In terms of what family members need to adapt in the home, Kenny said it always depends on the individual’s ability level. It is helpful to have an organization, such as the United Arc, go through the home and make recommendations and supply resource choices. The primary goals of an advocate would be to look at safety and self-care issues in the home for the person with Down syndrome. Experts can recommend strategies for remodeling, or just make recommendations for using what you have.
“Twenty or 30 years ago there wasn’t a lot out there for people to access (for help with family members who have Down syndrome). There are a lot more national resources now such as the National Down Syndrome Congress,” she said.
Kenny said that an important component to anyone’s home that has someone residing with them who has Down syndrome is supportive space for the care giver. For example, any private space, library, office or bathrooms with a little extra, like a whirlpool, can go a long way to maintaining emotional balance in the household.
Most if not all states have agencies that respond to adaptive needs in the homes of people who have intellectual or physical disabilities. In Massachusetts, we have the Assistive Technology Service. Carl Johnson, who works with the agency as an adaptive equipment designer, said if you have someone living with you with Down to try to have the simplest layout possible in your home. “If you have a complicated or highly modern home with lots of push buttons, furniture and technology, that can be hard for a person with Down. You want everything to be as straightforward as possible,” said Johnson.
Johnson added that no matter what you are looking at in the home — from door knobs and latches, to appliances and plumbing, the more basic the better.
In terms of appliances, nothing is more important than safe usage of a stovetop. “There is a type of stovetop you can purchase, for example, that has a relational pattern between the burners and the knobs. There are pictures on the knobs so that the person doesn’t even need to be able to read,” said Johnson.
If you are looking at security in your home, Johnson said that there is a padlock produced by Master Lock called “Speed Dial,” which is an extremely simple lock and code system that still provides a reasonable level of security and is easy to use by a person with Down.
Johnson agreed with Kenny that adaptations to the home for a person with Down syndrome are very individual, and that professional guidance is a good idea. Kenny also suggested The National Down Syndrome Society for further assistance.
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