How to Get Assisted Living for Adults with Down Syndrome

How to Get Assisted Living for Adults with Down Syndrome

Disability can be mildly challenging or extremely burdensome. Many with physical or intellectual impairments live nonetheless fairly normal and independent lives. Others, however, do best with some degree of help whether from family, therapists and, sometimes, institutional care.

People with Down syndrome can occupy any place on the spectrum from practical autonomy to intensive oversight. Of that number, a good percentage find their optimal arrangement in an assisted living facility. Such accommodations help residents to find an effective balance between self-determination and targeted support from an able staff of professionals. The key is to locate the place best suited to the resident.

What Is Down Syndrome?

According to the National Down Syndrome Society, this condition occurs when, of the 23 chromosome pairings carrying genetic coding, the 21st is replicated, in part or entirety. This extra pair actually thwarts normal development and is the source of traits common among those with Down syndrome, which include poor muscular composition, loose joints, a smaller frame, almond-shaped eyes, smaller hands, feet sand digits and a deep furrow across the palms.

The Centers for Disease Control (CDC) estimate that 6,000 Down syndrome babies are born in the U.S. annually. The symptoms are not uniformly present but are evident in varying degrees.

Why Does Down Syndrome Require Assisted Living?

The presence of Down syndrome does not mandate assisted living. As noted above, there are many cases where people live fairly well on their own. Still, more than a few suffer from partial deafness, obstructive sleep apnea that may need monitoring, recurring diseases of the eyes and even congenital heart disorders.

Those suffering from such disorders often need extra help with at least some activities in their daily routine. The degree to which such aid is necessary is determined by family members, doctors and other clinicians.

Community Options for Down Syndrome

There are, of course, places for adults with Down syndrome that are short of assisted living in terms of oversight. Some live in private homes with loved ones. In addition, there are what may be called vendor-owned or group homes, where an agency may supervise a handful of residents and attend to individual needs.

Adult foster homes are similar. In this instance, another family receives the Down syndrome patient and tends to their particular requirements. Shared living is a scenario that pairs able-bodied people with Down syndrome patients as roommates. Many thrive under these various regimes.

Assisted Living for Down Syndrome

Each of the options for residential care for Down syndrome adults provides a certain level of lifestyle support. Yet some patients need a higher level of attention, sometimes of a professional grade. If the cardiovascular or respiratory conditions listed above are such that careful observation is necessary, then assisted living could be preferable to other homes for Down syndrome.

That being said, not all assisted living facilities are created equal. Finding the right one takes research and communication in order to fit the resident to the appropriate assisted living community.

Finding the Right Community

A number of questions will help to filter the less suitable places from those of a better fit.

First of all, does the staff have the experience and equipment to serve the needs of those with Down syndrome? Are there other Down syndrome residents on site? How much independence can a potential resident exercise? What sort of conveniences are nearby?

Then there is the cost. Not all health plans will compensate assisted living establishments, in part or in full. Can the family meet the unpaid expense? Can the resident work and contribute likewise?