| President’s Message
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If you haven’t heard by now, you should know that the 2003 “Sharing Our Joy” Calendars are out. This is the fourth year that the organization has created a calendar and each year I say that it can’t get any better and each year I think it does. Many thinks go out to Rebecca Reifsteck, Milisa Harris, Kristin Pope, Calendar Committee members and of course Lynette Lambert for continued positive words and encouragement. This is our flagship product that continues to surpass our expectations in the way it has provided additional funding and communicates community awareness. I encourage all members and especially those families featured to take special interest in the marketing and distribution of this calendar. In August Dr. Lawrence G. Leichtman, an internationally know Clinical Geneticist, brought his 20+ years of expertise to Tulsa. Dr. Leichtman consulted with families to help devise comprehensive treatment plans for their children. Shelley and I signed up for one of his consulting sessions with Ellen which I found to be pretty in depth. One of the requirements in order for Dr. Leichtman to complete his recommendation is to have some blood test done. I never thought much of it until Shelley signed up at a lab to have the blood work drawn and Ellen would not cooperate at all for this procedure. Shelley and the attendants resigned to the fact that it was not going to be possible to get blood for the lab work on that day. I decided that maybe things would be better if dad was present at this procedure. So Shelley sets up another time to go to the lab and I go along. I must say that my little girl was very good and cooperated fully. The only problem is that her veins are really deep and the attendant was just not comfortable with what she was able to find. By this time I was wondering if we would ever be able to get the lab work done that Dr. Leichtman had ordered. On to “plan B,” Ellen was scheduled to have some dental work done at which time she would be sedated enough to have a tooth extracted and make room for new teeth. We decided to coordinate getting the blood at the same time as having the dental work done. Again I thought I might should be there for this procedure so I took off from work to see what assistance I could be. I was a few minutes late arriving to the dentist office and Shelley and Ellen were already in the room with Ellen already starting the sedation procedure. She was still excited to see me and I probably disrupted things a little by my late arrival. We used a pediatric dentist named Dr. Wilder who was referred to us for this procedure from our family dentist. I was concerned about whether or not he had treated any children with Down syndrome and he replied oh yes, probably about 1000. This made me a lot more comfortable with what was about to take place. It took about 20 minutes for the sedation to take effect enough to begin the procedures. By this time the lab technician had arrived that was going to be drawing the blood for the lab work. As the dentist began probing the lab technician simultaneously begin searching for a vein to draw blood. After a minute or so of heat pads applied to help with the circulation she was able to pin point her target area and succeeded with the first attempt. This was major relief to both Shelley and I as I could just imagine it taking several attempts before finding a vein. I really don’t think Ellen knew what had taken place due to the sedation and the fact she was probably more consumed with what the dentist was doing in her mouth than what the technician was doing with her arm. Anyway the long and short of it is that everything went okay and we just feel blessed to have had the pediatric dentist and the lab technician with the experience they displayed available to us and hope if you have needs of this nature that things go as well for you as they have for us. Repeat
Performance
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DSAT would like to thank the Young People’s Clinic and Therapy Time for allowing Dr. Leichtman to use their clinics for his consultations. We really appreciate their help. One Of
Our Stars
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Mom’s Support
Group
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Teen Forum
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Bad
Weather Policy
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You
Can Support the Good Work of DSAT!
Join DSAT: The membership contribution of $20.00 primarily supports the postage, printing and copying of our newsletters and monthly postcard meeting notices. Without this we would be using funds earmarked for other services we provide. Give a Cash Gift: This is the simplest way to give. You can mail a check directly to DSAT at P.O. Box 54877, Tulsa, OK for any amount. Your gift is tax deductible. Include DSAT in your Will: Providing a charitable bequest in your will is one of the best ways to save on federal estate taxes. Charitable bequest are deductible for federal tax purposes. Donate Stock: By donating stock to DSAT, you receive a charitable deduction for its full, present, fair-market value and there is no tax on the appreciation. In addition, there is no capital-gains tax on transfer of stock to DSAT. Create a Charitable Remainder Trust: A charitable Remainder Trust provides income payments during your lifetime to a non-charitable beneficiary followed by a gift of the remainder of the trust to DSAT after you pass away. This type of trust allows you to reduce estate taxes, eliminate capital gains and claim an income tax deduction. Create a Charitable Lead Trust: With a charitable Lead Trust, your heirs receive the residual assets after you pass away and DSAT receives income during your lifetime. Like a Charitable Remainder Trust, a CLT offers current income tax deductions and a reduction of capital gains. Need more information? Contact Tracey Wilson at 288-7719. Thank
You!
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Dr. Leichtman
2002 Sharing Our Joy Calendar
2002
Buddy Walk Sponsors
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Calendar
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November 21st
December 7th
February 20th
Newsletter
Deadlines
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Planning
For The Future
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The hopes and dreams of families of children with special needs are no different from anyone else. They simply want the best for their child. Parents of children who have special needs have fought countless battles to help their child receive a good education, have a social life, gain employment, and find appropriate housing. Yet, their greatest concern is generally suppressed because it always seems too overwhelming to contemplate. It boils down to one issue: “We know our children will always need help to maintain everything we have helped them achieve. We will not always be around. How can we plan so they will always have a comfortable life without us?” Planning is not a question of “what if?”, but rather “when?” Some families believe that they do not have to plan because their child has only a “mild” disability. The world is sometimes harder on those with marginal problems. These individuals often become the marginal problems in society. Without continued advocacy and support, they become the followers... and the victims. You know that no one will care for or love your child the way you do. Each day, each week, and each month of postponement dims the future just a little and adds to the pressure upon the family. Added pressure is not needed as the family fights the daily advocacy battles. Planning Needs
What are the key areas that every family, regardless of the age of the child or type of disability must consider? Who will look after your child when you are old, acquire a disability, or die? Who will provide the necessary funds to ensure a comfortable life? Most people with disabilities will receive some form of government benefits-SSI (Supplemental Security Income) or Medicaid. The amount of these benefits are one-third less than a poverty level income. Parents traditionally provide the difference in cash and resources to bring up their child’s comfort level and improve the quality of life for them. Where will this extra money come from if the parents are not there to provide it? Who will manage the funds or resources you do leave, so they will last your child’s lifetime? A lifetime with good medical care could extend many years after you are gone. Where will your child live? How will funeral expenses be paid? Funerals can be expensive, and cost more in the future. Will your family and friends support the decisions you make and fund? Will they be shocked with the unexpected responsibility, or welcoming and supportive of your decisions? Planning Approaches
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Families with some significant resources may call upon financial advisors to devise a plan for allocation of assets. These additional resources combined with a good legal plan allow the person to enjoy a better quality of life. Without the correct legal or tax advice, however, the extra income may also disqualify your child from much-needed government and medical benefits. Ultimately, this plan still makes the child dependent upon others to make the best decisions. Those who have no special resources or who do no planning, rely upon the government welfare system or a local charity. Too often, the Medicaid-funded institution or group home with $30 a month for personal needs, is the typical government benefit. In the last 15 years, the charitable or nonprofit community has offered serious solutions to the plight of parents. Developed by parents involved in charities, this approach centers planning on the needs of the person, not a legal document or an investment. The approach starts with “Circles of Friends-all those involved in the life of the person with a disability-coming together to help plan and accept responsibility for the future. The members of the circles can be individuals or a charity’s advocacy service. Generally, if the charity forms the circles, it is done when the family
contracts with them in advance and involves a fee for service. The charity
would then assign a social worker to visit and look after the person who
has special needs. In some cases, parents will request that the social
worker organize a personal Circle of Friends for the individual. Unfortunately,
parents may leave out or postpone the still-important legal and financial
components when using this approach.
Legal Plan:
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Letter of Intent
We call this method of sharing information about your child a Letter of Intent. There are many different approaches, all of which are acceptable. Handwritten or typed, the format does not matter. Address it, “To Whom It May Concern,” or simply as a letter to your child: “Dear Mary, this is what I want for you in the future.” There is no right or wrong method. It is the information and love that is conveyed that makes it a success. Start at the beginning. Provide a brief summary with essential information such as names of the family members, child’s birth date, social security numbers of the child and parents, marriage dates, etc. Then go to the heart of the letter. Take each of the life planning topics one by one. State the topic such as Residential Care (you can underline it) and then write one paragraph about where your child has lived in the past, the next paragraph about where he or she presently living, and then end it with a list of the team-based options for future residential settings. You can add as many details, and reasons for your decisions as you feel necessary. Sign and date it at the end. The Letter of Intent is complete when you feel you have shared everything that a future care provider may need to know in order to offer the same quality of care that you have always provided. You will be amazed at how much you want to communicate. Emergency Instructions should be listed on one page that can be attached to the front of the letter. In the event that you are suddenly incapacitated, you want the person who takes over to have certain important information immediately. This information should include: medication (location/dosages/times), medical conditions, name of doctors, person to contact for more information, case manager, recommended respite care, where your child should live during a crisis (relative, respite care), behavior management techniques, favorite foods, sleep routines, location of clothing and favorite toys, etc. Keep it simple-you can refer to your Letter of Intent for details. The Letter of Intent is also the basic blueprint that you will use to direct professionals. A lawyer with special needs experience reading this letter should have enough background information to tailor a personalized legal plan. The financial advisor should know exactly what costs are involved and then may help find resources to make the plan work. If you elect to use advocacy services, they will also have a better understanding of your child and can assign a compatible advocate. The Letter of Intent is not a legal document. It does not compel anyone
to do anything. It is your Life Plan and it is one of the most important
documents you will ever write. A will, trust, or insurance policy will
carry out your wishes. The Letter of Intent is a summary of your wishes.
With all the pieces in place, the next step is to ensure that your plan can be accessed easily and carried out quickly. Too often, we develop great legal documents and carefully store them away for the reading of the will. When a person who has a disability is depending on your assistance, he or she often cannot wait for your instructions to be found months later. You may certainly keep copies of important documents in a safe deposit box at the bank, but you also need to make sure that the information is readily available to future care providers. Getting It Together:
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Here are some tips for assembling this information. Purchase a large three-ring binder notebook with 10 to 12 dividers for different topics of information. Be sure to put a title on the cover and spine, (e.g., “John D. Doe’s Life Plan”). Then, begin the process of sorting out the most important information you want to share. Remember to include in this notebook any information that you think a care provider will need to continue the high level of care you now offer. Every family will have their own ideas of what is important, but some common information sections that should be included are: · Letter of Intent: This document summarizes overall hopes and
desires of and for the person who has a disability. Place it at the beginning
of the notebook.
· Medication: Many people who have disabilities must take medication
at specific times each day. You may want to note the current instructions
on a brightly-colored piece of paper and attach it to the inside of the
front cover. In this way, anyone who picks up the notebook will know where
you keep the medication, the types and reasons for each one (e.g., behavior,
heart problems and seizures), and the time, amount, and methods of dosage.
Paste in your current doctor’s business cards and that of the pharmacy
where prescriptions are filled.
Short-term Implementation
Assume for the moment that your loved one lives with you, and you are
in an accident while driving alone. Who knows that your loved is at home
and needs care? You may be unable to speak. That is why it is important
to keep a special Emergency Card in with your driver’s license. There is
a sample below. When someone looks for your identification they will find
the Emergency Card and know that you have the responsibility for caring
for a person who has a disability. They will know to call certain people
or agencies that can get to your home to look after your loved one. It
may even be a life saver when it alerts others that important medications
must be given at specific times.
Long-term Implementation
Generally, a family member will arrange for a meeting of the key participants to discuss the overall Life Plan. This team may include family members, attorney, financial adviser, care provider, employer/workshop coordinators, representatives of local charitable agencies, and advocates, guardians, or conservators. The main role of this team is to attempt to carry out your wishes as stated in your Letter of Intent. If you have clearly described your wishes, spoken with these people in advance, and provided the proper legal documentation and financial support, the implementation process can begin quickly and smoothly. Person with the Disability
The development of a well thought-out Life Plan will go a long way in
helping to ensure that your loved one enjoys a comfortable life. Keep it
visible and, most of all, keep it up to date. It may be your most important
gift to your loved one.
SFOR SALE
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DISCLAIMER:
The Down Syndrome Association Of Tulsa does not promote, recommend or endorse
any service, professional or organization. Decisions regarding the
use of any service, professional or organization are the sole responsibility
of the family or guardian.
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| President:
Tracey Wilson (918) 288-7719 or (918) 488-4060 Top of Page Fax (918) 288-7897 E-mail Tracey Wilson Co-Vice Presidents:
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Party Planner
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Development Coordinator
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