The special alliance

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May 2008 - Vol. 2, Issue 11

The Voice, The Official Newsletter of SNA

· how we help families

· how we help professionals

· related topics

· more about us

Welcome!

You are reading The Voice, the e-mail newsletter of The Special Needs

Alliance. This installment is a very moving, personal and true story from

Special Needs Alliance member Barbara A. Isenhour of Seattle, Washington.

She has practiced law for over 33 years, focusing on the legal issues facing

the elderly and disabled persons of all ages. Barbara was selected as one of

the city's best attorneys in Seattle Magazine for three years and has been

selected as a " Super Lawyer " in Law and Politics Magazine for the past five

years.

Realistically Assessing an Exceptional Child's Future

Today my client Elsa called me to tell me she has been diagnosed with cancer

and probably has less than six months to live. I have represented Elsa for

several years in her capacity as the guardian for her son, Carl. Elsa is now

88 and Carl is almost 60. He lives in a group home with other adult men with

special needs but has regular contact with his mother.

Elsa was very matter-of-fact about her illness but wanted me to review her

estate plan to be sure it was in order. Elsa has four children and her Will

leaves her estate in equal shares to each of them. Carl's share will be

distributed to a special needs trust for his benefit to preserve his

Medicaid benefits that pay for his group home.

" My biggest concern, " Elsa confides in me, " is whether I am leaving enough

money to provide for Carl after my death. Until now I have not had to spend

much money to supplement the care he receives from Medicaid and Social

Security, so I think the money I am leaving for him will be enough. "

Elsa is struggling with one of the biggest worries facing parents with a

special needs child. Whether the child is six or sixty there is always a

worry about what will happen when parents are not longer there to provide

care, supervision, security and financial support.

Although Carl's needs have been modest until now, I reminded Elsa that she

spends a great deal of time every year monitoring Carl's care and government

benefits. Elsa has always been a warrior whenever Carl's benefits are

threatened. When he lost jobs in the past through supported work programs,

she worked with the employer to see if the problems could be resolved. If

not, she immediately went back to the state vocational job program to be

sure they tried to find Carl another job. If Carl's group home was not

providing appropriate care, Elsa spent hours problem solving. If the

residential care did not meet her standards, she spent even more hours

looking for a more suitable home. If Carl's case manager at the Department

of Developmental Disabilities was changed, Elsa made a point to meet the new

person and get that person up-to-speed on Carl's needs and her expectations.

And I can count on Elsa calling my office within days of the end of her

guardianship accounting period to ask when she can expect a draft of her

guardianship report from my office.

I pointed out to Elsa that one reason Carl's expenses have been modest until

now is because she had provided so much support for him at no cost. I asked

Elsa, " if you are no longer able to provide all of the support you currently

provide to Carl, will your other children step into your shoes and provide

the advocacy that you provide now? " The answer to that question is a quick,

" No. " The children are not in the area and are too busy with their jobs to

help for the indefinite future.

We then discussed the estimated cost to hire a good case manager to put in

the hours Elsa does to monitor Carl's employment issues, his residential

care, his government benefits and his health care issues for the rest of his

life. Suddenly the money Elsa was planning to leave for Carl does not seem

to be adequate to meet his needs.

Elsa is going to go over projected expenses in more detail, talk to her

children and then call me back with a final decision about how much she

wants to leave for Carl. No matter what that final number is, I am sure Elsa

will have greater peace of mind knowing that she has taken into account what

it will cost to replace her tireless commitment to Carl's well being.

About this Newsletter: We hope you find this newsletter useful and

informative, but it is not the same as legal counsel. A free newsletter is

ultimately worth everything it costs you; you rely on it at your own risk.

Good legal advice includes a review of all of the facts of your situation,

including many that may at first blush seem to you not to matter. The plan

it generates is sensitive to your goals and wishes while taking into account

a whole panoply of laws, rules and practices, many not published. That is

what The Special Needs Alliance is all about. Contact information for a

member in your state may be obtained by calling toll-free (877) 572-8472, or

by visiting www.specialneedsalliance.com.

2008 Special Needs Alliance. .