Developmental Disabilities on the Rise

What kind of preparations are important to make for aging adults with developmental disabilities? Because we’re seeing more children in these situations, we also expect to see adults, and aging adults with special needs.

With autism, for example, reported to be on the rise, it’s a good thing that more is known now than ever before about diagnoses and treatments for people with developmental disabilities. It’s also fortunate that more elder care communities are now available to accommodate our aging loved ones. Here in St. Louis, several new elder care communities now specialize in serving this special segment of our population.

What many don’t realize is the many kinds of conditions that some in our aging population are facing. Here’s a pretty good list. You’ll notice that some disabilities are organic originating from childhood. Others are not.

•    Cerebral Palsy
•    Multiple Sclerosis
•    Down Syndrome
•    Learning Disabilities
•    Neurological Disorders
•    Intellectual Disabilities
•    Autism
•    Asperger’s
•    Head Injuries
•    Dementia in all its forms

Taking a Person-Centric Approach to the Legal Side

Recognizing, diagnosing, and treating adults with developmental disabilities is one thing. Making legal preparation for their care, protecting their personal interests and helping them face their unique challenges is something else.

While it’s true that we’re talking about legal issues, people you love are at the center of matters like these. People with developmental disabilities can’t be painted with a broad brush. Even within any given diagnosis, as with Down Syndrome for example, each person is affected differently. Beyond that, each individual has their own personal interests and desires. Great planning takes those things into consideration.

Questions need to be asked, much the same as for anyone else. But sometimes people forget the human side when they step into the legal arena. These typical questions cover both the legal and human side of the equation.

•    Who will make financial decisions for them?
•    Who will make medical decisions for them?
•    Who will provide care for them?
•    Can they live in the same place in which they’re accustomed?
•    Do they WANT TO live in the same place?
•    What about their wishes related to travel and entertainment?

Documents Supporting the Person-Centric Approach

As with other situations, the same legal documents need to be created for seniors with developmental disabilities. Creating a Trust to assist with the future costs of their care and financial management can be crucial.  If they have the mental capability to do so, their Will, Trust, Financial Power of Attorney, Medical Power of Attorney and Medical Directive all need to be executed.”

A Special Needs Memorandum of Intent isn’t a legal document, but a great planning tool. It’s meant to provide guidance for those who will be responsible for various aspects of care for a child or adult with special needs. What are your expectations? What are their wishes? It may be that your loved one can’t articulate their wishes to a stranger, the way they have with you.

The memorandum fills in the blanks that relate to their activities, aspirations, medications, education and other aspects of their life. It also informs caregivers regarding their expected involvement in those elements of life, including discipline or other parental type responsibilities.

Don’t Assume You’ll Outlive Them

For whatever reason, people with loved ones who have one of these conditions often assume that they will outlive them. In fact, however, these disabilities don’t necessarily prevent them from living a long life. We had a situation where a father in his 90’s had two daughters, both in their 70’s. One of them had developmental disabilities, and could easily outlive her sister.

In your absence, who will manage your loved one’s affairs? These are critical decisions. The ideal situation is for a familiar, caring family member to bear the responsibility. Sometimes that’s just not possible. Sometimes there are no living relatives close enough to be named in Powers of Attorney, and a third party must be named.

We will cover that in a follow-up article.

Trigger Points

Finally, there are certain life events that serve as a clue that your existing documents should be reviewed and updated. We often talk about this subject, but there’s more at stake in these situations. Here’s a basic list.

•    A family member (especially a decision maker) passes away
•    You or a key family member marries or divorces
•    The medical condition of a key family member has an important change
•    You start or dissolve a business
•    You change your residence to another state

The way we like to think about it is this: Estate planning isn’t done simply for the sake of a legal exercise. It’s about people. It’s about making sure that you and those you love are protected and that your (and their) wishes are honored.