Future Planning: Guardianship

As posted on the ARC's web site at http://www.thearc.org

What is guardianship

Guardianship is the legal power to care for another person and manage his or her affairs. Each state has its own specific laws on guardianship, but the following generally describes the guardianship laws for adults throughout the United States:

Guardianship is a legal, not medical determination. When people become adults -- including people with mental retardation -- they get all the legal rights and responsibilities of any adult. Only the courts have the authority to remove these rights. A court makes this decision based on the person's abilities to handle personal decisions, money, property and similar matters. The incapacity (or legal inability) to handle these matters is grounds for a guardianship, not mental retardation.

How do I decide if my son or daughter needs guardianship?

Appointing a guardian for someone with mental retardation is a serious matter. This legal status deprives the person of some rights and independence, and has the potential for abuse because of the power it gives one individual over another. However, there may be different reasons why a son or daughter with mental retardation may need a guardian. Some common reasons are:

What are the different types of guardianship?

Most states have different legal protective statuses or types of guardianship. State laws also often differ in defining incapacity, interpreting the guardian's duties and qualifications, terminology, reporting, documentation, costs and other areas related to guardianship.

In most states, the different types of guardianship are commonly called:

Guardian of the person or property - This type of guardianship is sometimes characterized as "guardian of the person" or "guardian of the estate." In the guardian of the person, the individual needs a guardian to decide personal issues. These decisions may include where to live, consent for medical treatment and signing for services.

The court will usually identify specific decision-making areas under guardianship of the person. Courts frequently require periodic reports from the guardian about the guardian's actions over the course of the year or other period.

A guardian of the estate, called a conservator in most states, usually has power over the ward's money or property, not the individual's personal matters. Some states also do not require a judgment of the person's incapacity for a guardianship of the estate. The court can base the need for conservatorship by finding the person unable to manage assets or property.

The court requires this type of guardian to protect the person's property and use it for the person's care, support, education and other areas of general welfare. The guardian of the estate must use the ward's money for the ward's care and to account periodically to the court. This guardian's duties include careful investment of the guardianship assets. Guardians who have foolishly invested their ward's money may have to pay it back from their own money. They must also keep good records and make them available to the court. Some states require this guardian to put up a bond.

Full guardianship - A full or plenary guardianship basically includes guardianship over all the person's personal and property decision-making. It is usually a collection of all the powers and responsibilities mentioned above. Full guardianship is quite common, as it is the kind with which courts are most familiar.

Since full guardianship involves controlling every aspect of the person's life, it is the most restrictive. However, the person under a full guardianship still retains his or her basic civil rights.

Full guardianship is useful for individuals whose mental retardation is so severe that they are not capable of making informed decisions, and should be used only after exploring the alternatives, including limited guardianship.

Limited guardianship - Many states have designed laws for "limited guardianship" to encourage a person to keep as much control as possible over his or her own life. Under this legal approach, the guardian has authority over the ward only in specifically defined matters. Every decision outside of those defined areas remains with the individual who has mental retardation. This form of guardianship allows the legal guardian to decide only in areas where the person is not capable.

Limited guardianship does require more attention from the court, attorneys and guardians to be sure it is specific to the individual's needs. Limited guardianship also must try to foresee all the individual's future legal needs. For example, an unpredictable legal situation might arise that is not covered under the limited guardianship. The guardian may not have the authority to provide needed protection and may have to return to court to get more decision-making power.

In many states, the court may authorize a mix of guardianships. For example, a person may need full guardianship of the estate and only limited guardianship over personal matters.

Temporary guardianship - Some states allow guardianship for a limited time. If a legal problem arises from a specific situation, the court can issue a "protective order" or temporary guardianship. Under a protective order, the court can give another person, a public guardian or corporate guardianship program (these last two are discussed later) the legal authority to handle that specific situation. When the problem is resolved, the order usually ends with no permanent guardianship.

Temporary guardianship usually only applies to temporary situations such as those caused by drugs, momentary illness or special medical situations. It has limited uses for long-term, reoccurring medical situations or incapacities due to a disability. This allows family members or an agency to pursue temporary guardianship if medical or other treatment is necessary but not provided because of questionable ability to consent. Once the person has temporary guardianship and treatment is provided, the guardianship is usually reviewed to determine if it should be removed.

What is a public guardian?

There will not always be a parent, other family member or friend to act as guardian of a person with mental retardation. For these and other reasons, many states have appointed public guardians that provide guardianship to people with no family available or willing to become guardian. This is referred to as public guardianship. Nonprofit organizations under contract with the state or local government may also provide public guardianship services.

Public guardians often have large caseloads, time-consuming paperwork and other duties, so must divide their time among responsibilities. These responsibilities can limit the time and resources public guardians have available to assist their wards. Thus, this type of guardianship is often considered as a "last resort," especially for those who can secure an individual guardian or get the services they need elsewhere.

State resources generally finance public guardianship. Although states usually have safeguards that free public guardians to advocate for their wards, a conflict of interest could arise if a public guardian should have to oppose another state-funded agency. If public guardianship is being considered for a person with mental retardation, care should be taken to be sure these guardians have the time, resources and latitude to fulfill their responsibilities.

What is corporate guardianship?

Many states allow incorporated agencies to provide guardianship and related services to people with mental retardation. In these agencies, the corporation is the guardian and assigns a professional staff person or volunteer to carry out guardianship responsibilities for the individual. These organizations often provide legal guardianship, individual service coordination, periodic support and even temporary guardianship. Parents can contract with such an agency to start specific services either after they die or when they can no longer help their child. Some state agencies also contract with these organizations for guardianship services. The organization's revenues may come from advanced funding from parents, bequests from the parent's estate, life insurance, United Way funding, contributions or subsidies from other organizations such as chapters of The Arc.

Before contracting with a corporate guardianship agency, parents should investigate the organization to be sure it is well managed, has stable funding and provides quality services. There must be adequate proof the program will remain solvent and continue to supply good services throughout the lives of its wards.

Note: This Q&A is only a general overview of one part of future planning. Families should explore with a knowledgeable attorney or advocate the alternatives to guardianship and other aspects of planning prior to making legally binding decisions. It is highly recommended that readers also review the materials on guardianship in The Arc's Future Planning Resources list.

To obtain a copy of The Arc's Future Planning Resources a list of books, agencies and other resources that address financial and legal planning, send a request and $2 for postage and handling to: The Arc of the United States, P.O. Box 1047, Arlington, Texas 76010.

For specific information on states' laws, review the materials in the Future Planning Resources at the Arc's World Wide Web Site at http://TheArc.org/welcome.html,  confer with an attorney or contact your chapter of The Arc.

The Arc
National Headquarters
1010 Wayne Ave. Suite 650
Silver Spring, MD 20910
301/565-3842
301/565-5342 (fax)
info@thearc.org (e-mail)

‘Coming Around Again’

By Linda Carman - December, 22 2004, as published at

http://www.iberkshires.com/story.php?story_id=16365

Kelly Gallagher is a 13 year-old boy with CLS and a life-long crush on Carly Simon.
—MCH

   WILLIAMSTOWN — Christmas came early for a severely disabled local boy who has long adored singer songwriter Carly Simon.
   Kelly Gallagher, 13, got a Christmas present from his family — and from Simon herself — in the form of a concert and what turned out to be a close and lengthy tete-a-tete with his favorite star in her first live performance in years, a holiday benefit Saturday at the Apollo Theater in Harlem.
   “This was the best Christmas present he could ever have hoped for,” said Kelly’s father, Ron Gallagher, Tuesday. “It was a magical time for him to not only meet this idol that he lives and breathes every day, but also to sit with her and have her sing just to him.
   “He was just so taken by it, all he could do was stare at her and say her name over and over,” Gallagher added. “It’s something we’ve talked about for years, him having the opportunity to actually meet Carly … It was a very emotional night. We’re still all on Cloud Nine. This will stick with us for the rest of our lives.”
   The following is how Gallagher told the story of his family’s experience:
   Kelly Gallagher 13, has loved the music and videos of Carly Simon almost since infancy. Although he has very limited speech, one of the first words he ever spoke was “Carly.”
   Just as background, Kelly’s attendance at the concert took the combined efforts of family friend Ben Kaplan and Kelly’s sister, Casey. Ben called the Gallagher family when he heard that Carly was hosting a holiday benefit concert at the famous Apollo Theater in Harlem. We thought it would be the absolute ideal Christmas present for Kelly but soon realized that it wasn't in the cards after we saw the ticket price of $300.
   Without telling us, about a month ago, my 23-year-old daughter Casey wrote to Carly to thank her for her music and how much it means to Kelly.
   Last Thursday night [Dec. 16], we received an incredible call from Carly's manager inviting us to her Christmas show scheduled for that Saturday night and to give us the opportunity to have Kelly meet Carly after the performance.
We drove to New York City at noon on Saturday, had dinner at Sylvia’s Soul Food Restaurant in Harlem and were seated by 7:30 for the 8 p.m. show. Ten minutes before the show began, Kelly had a grand mal seizure. We moved Kelly into a hallway outside of the theater and administered medication, which made him sleep for the next 2 1/2 hours.
   At the very end of the three-hour show, Carly started singing "You’re So Vain." Suddenly, Kelly woke up from his deep sleep in the darkened waiting room and said, "That's Carly!"
   We brought him into the rear of the theater, where he watched her sing her encore song, which is Kelly's favorite tune, "Coming Around Again.”
   An usher noticed us and escorted us to the front of the stage where Carly looked down to see Kelly clapping and smiling to his favorite song.
   After the show, we were escorted to the Green Room to meet Carly, who sat with Kelly for 15 minutes, singing a medley of her greatest hits, much to the delight of Kelly, who kept hugging her and saying "That's Carly" over and over again.
Carly was so incredibly kind and gentle with Kelly and seemed to enjoy meeting him as much as he meeting her.
   When Carly arrived at the Green Room after her show, there were about 20 people present including her family members and members of the press. Her eyes scanned the room to find Kelly, and she came over and sat next to him. She immediately gazed into his eyes while cupping the back of his head. She sang a song just for him in the softest voice … at a very slow pace. It went,

    "My name is Carly,
    Your name is Kelly.
    How are you Kelly?
    My name is Carly.”
 

   Witnessing this interaction between a superstar and the way that she connected with special boy was very spiritual. I figured that she would give him a hug and go on to the others in the crowd. She sat there, stroking his hair, and began to sing "Loving You's the Right Thing To Do." With Kelly gazing into her eyes, she mesmerized him with bits of each of the songs he has listened to hundreds of times on his well-worn tape player.
   Although there were dozens of folks waiting to congratulate her on her monumental performance, she paid them no attention — and no one intruded into their space. At that hectic place, at that special moment in time, it was just she and Kelly —two beautiful souls — although meeting physically for the very first time, in harmony since Day One.
My other children sang along on some of the songs Carly sang to Kelly. The amazing thing was that, after Carly had given him so much attention and moved on to see others in the room, she came right back to Kelly again and again, as if magnetized by his charm
   We were very fortunate to have our entire family witness this moment.
   Our other two children have been totally selfless in their love, devotion and personal care for Kelly. Casey is a graduate of Siena College, and Devin, 19, attends Union College. Without their support and understanding, the quality of Kelly's and my wife’s and my life would pale by comparison. Although we get great support from Kelly’s teachers and therapists and our wonderful friends, it's in the home where a family with a severely disabled child struggles to achieve harmony. Just lifting Kelly in and out of his wheelchair on a constant basis requires teamwork and cooperation. My children have always been there for us.    Without their willingness to perform childcare duties my wife [Deborah] and I would generally be housebound.
   Casey was the office administrator of a real-estate development firm in St. Simons, Ga., last year. As much as she loved her job and the location, she decided to come back home to be closer to the brother she adores. Devin had struggled with his college acceptance decisions — he seriously thought about attending Hobart College but settled on Union to be closer to the family. As parents to these great kids, it's very difficult to share equal amounts of attention to each child when Kelly's needs are almost constant.
   Furthermore, our children have had to play a leading role in every aspect of Kelly’s life, which in a sense requires them to act as secondary parents. From administering medication to assisting Kelly with his activities of daily living, the needs placed on my children are tremendous, but I find that they demonstrate that the true love that they have for Kelly seemingly overshadows the hardships that they sometimes must endure.
   This is where Carly comes in. Through her music, Carly has been a constant source of comfort for our family. Aside from her music being played day and night in our home, throughout Kelly's many surgeries, Carly Simon tunes have played in the background each time Kelly awakens from an operation. He always awakes with his one constant thought about the situation: He says, "I know nothing stays the same," a line from the song "Coming Around Again.” At that moment, Kelly is inspiring each of our family members to hang as tough as he is and know that "He'll be coming around again.’
   Another of his favorite sayings is "I'm here!" Kelly's infectious huge smile and phenomenal personality make him a town celebrity in Williamstown. I've heard from people I have never met that, "Everyone knows Kelly Gallagher.” He is constantly greeting strangers to ask for their name and shaking hands as if he were running for public office. When you take an interest in Kelly, he responds with a hearty, "Oh Man!"
   Kelly is clearly a one-of-a-kind spirit, and I can honestly say without any bias that he is the finest human being I have ever known.

Story submitted to CLSF by:
Ron Gallagher
Williamstown, MA           

Circle of Friends

Tyler Gilliss, Age 12

   Tyler was medically diagnosed just this year through genetic testing and tested positive for the RSK2 gene and so is confirmed as having CLS.
   Tyler is 12 years old now and doing very well. He is on respiridone now to curb his temper and that seems to be working.
I have been fortunate in that Tyler hasn’t exhibited any of the common symptoms of CLS ie: drop attacks, scoliosis, hearing impairment. He has already gone through puberty which is kind of weird as he is so immature mentally so it is like having an 8 year old in a 16 year old body.
   Tyler is currently living with his father in New Brunswick, he moved there in January of this year. NB has a better school program for Tyler and their program is fully integrated. I am of the belief that developmentally delayed children progress better when they are with normal children. Tyler has a parrot personality and so parrots the behaviour of those that he is around the most.
   Here in Toronto, the school board is pro-segregation and wanted to put Tyler in a class of severely developmentally delayed children. It was a hard choice to make but Tyler loves his new school and his education assistant is wonderful with him! When Tyler was here with me, he got suspended from school every other week which frustrated both him and me. In his new school, they understand that his outbursts are a result of frustration and so when this happens they know that they have exceeded his abilities and re-evaluate is program accordingly.
   They have discovered that Tyler tires quite easily and that a full day at school is too much for him so he only goes to school until 1:00 instead of the standard 2:30.
   He is coming home to spend 2 weeks with me in August. I am so excited to have him home again. I miss him so much.

Sonya Gilliss
Toronto, Ontario, Canada

Curt Cheney, Age 32

   I was just reading the article on the 20 year follow-up in the Literature section on the CLSF.info site. On page 2 on the right column near the bottom, where it talks about the person being 20 and the spinal issues, it is very similar to what we encountered with Curt. He is now 32, but when he was 29 he fell and suffered some paralysis of his arms and hands. When they did the MRI they discovered he had a congenital narrowing of the spinal canal in the cervical area.
   The surgery they did was a laminoplasty to make more room for the spinal cord and decrease chances of further paralysis. He did well after the surgery and recovered the use of his arms.
   Then in March of this year he had some paralysis type symptoms and drug his left leg. In the MRI it was found that their again was narrowing and a discectomy and fusion was performed in the cervical area. When he had his first surgery the doctors talked about the thick layer of calcification they had to go through to get to his cervical spine and what hard bones he had.
During his second surgery I had told the surgeon about how hard they had said his bones were and he said ya, and really didn't believe me. When he got done with the surgery, the first thing he told me was, Curt has the hardest bones I have worked on.
I just thought I would pass on the info, as it seems that the condition of the congenitally small spinal canal was a commonality with the other CLS person, and the calcification in the ligamentum flava, and the paralization issue.
   The surgery has not stopped Curt's drop attacks, but it has hopefully kept him mobile longer and less danger of paralization. It's all just treating what symptoms and issues come up anyway with our CLS people, but I feel that this could really be an issue with more CLS people.
   If any questions, contact me.

Sandy Cheney
Barnum, MN, USA

Dear Ms Hoffman,
   Thanks for the latest CLSF News, which came July 14th, 2005. There is a letter from Sue Lewis about her son Robert, who has a disorder of the liver and some very troublesome foot intolerances. In the published review of my syndrome found in Genetics In Medicine 2003, Volume 5, pages 187-193, there are reports of microscopic examinations of the livers of five patients who had CLS. Three of the five had abnormalities of the liver cells. So liver problems may prove to be frequent and typical features of the syndrome. But what about food intolerance? I have not read or heard of these intolerances showing up in our patients, so I will give the subject more thougt and keep my eyes open. Probably Robert and his doctors can lead us to more information about this and a better understanding of CLS.

Cordially,
Grange Coffin

Thanks for Caring!

The following families or individuals have recently made generous donations to the Coffin-Lowry Syndrome Foundation:

Susan Malak
Cudahy, WI

Robert and Barbara Kline

Roseville, MN

Send your donations to:  

Coffin-Lowry Syndrome Foundation

c/o Mary Hoffman

3045 255th Ave SE

Sammamish, WA 98075 

(U.S. Funds, please)

For a donation of $50 or more, you will receive a set of five beautiful hand-made greeting cards like the one below. The cards are made with exotic papers and mizuhiki cord embellishments. No two are exactly alike. Click here for full-color samples