Autism

ABLE (Achieving a Better Life Experience) accounts offer people with disabilities a great, tax-free way to accumulate money without jeopardizing their qualifications for Supplemental Security Income (SSI) and other means-tested programs. Withdrawals are tax-free as long as the money is used for “qualified disability expenses.”  The arguments for starting and maintaining such funds are overwhelming, not least of which is the wide variety of things on which the money can be spent.

To build 529A ABLE accounts, beneficiaries (and other contributors) can put up to $16,000 total into these funds each year.

Last month, we discussed the most important documents you need to prepare yourself for a potential disability that impairs your ability to make financial or healthcare decisions for yourself.  This month we will discuss what to do if you are responsible for making healthcare or financial decisions for someone with a disability.

A few years ago, my father started to show signs that he was suffering from dementia.  He was always a very intelligent man and had good social skills, so the dementia was most likely hidden for a number of  years. 

At some point, he began paying his bills twice or not paying them at all, and he and his girlfriend got lost while driving to familiar places.

Writing Instructions to Potential Guardians

If you have minor children, or children with disabilities, the thought of leaving them suddenly is unimaginable.  Parents know their children- their schedules, their health, their likes and dislikes- but keep most of that knowledge in their heads.  When my kids were growing up, I knew when they needed to be at soccer practice and church, who their doctor was and how to reach her, and how to tell when they were sick.  Other than abbreviations on my calendar and names in my database, there was no formal written schedule of activities or list of important contacts.

Most parents can’t imagine how someone would be able to step in and take care of their children.

Last fall the Social Security Administration quietly released the text of changes to the Program Operations Manual System -- the POMS. Though described as "clarifications" by Social Security, they were actually far-reaching changes that would have driven up the cost of trust administration, complicated the lives of beneficiaries and provided no additional protection for anyone involved.

Lawyers, trustees and advocates raised objections, and thankfully Social Security listened. Last week another set of changes were announced and the news is entirely good for everyone.

First, a word about POMS.

Administering a "special needs" trust can be a challenge. The rules often seem vague, and they occasionally shift. What may seem like a simple question might actually involve layers of complexity. Sometimes expenditures might be permissible under the rules of, say, the Social Security Administration, but not acceptable to AHCCCS, the Arizona Medicaid agency -- or vice versa. Trustees work in an environment of many constantly-moving parts.

It is a new strategy for Georgia, one of several states responding to mounting pressure from the Justice Department, which in recent years has threatened legal action against states accused of violating the civil rights of thousands of developmentally disabled people by needlessly segregating them in public hospitals, nursing homes and day programs.

For a family with a loved one who is mentally disabled, one of the hardest decisions they will have to face is determining the proper care for their loved one. Until recently, many mentally disabled persons have been placed in hospitals to live for the rest of their lie. While they are under constant care, there are social elements that are missing when living in a hospital. These social elements, such as sense of community, friendships, and activities like dancing, are essential for personal growth.

Combating Autism Reauthorization Act of 2011

You can’t turn on the television or radio without hearing about the negotiations – or lack of negotiations- in Congress regarding the looming budget crisis.  We are all concerned about whether our elected representatives in Washington can come to a compromise that will help the country out of the current debt crisis.  Of great concern to those of us who work with families who have family members with special needs is whether, and how, the few programs left to support these families will be affected.

Assuming Congress gets through these negotiations and gets back to work on other important issues, Congress has the opportunity to address a significant issue that the United States faces today.  That issue is that the number of persons diagnosed as being on the Autism spectrum is increasing at an alarming rate.