Disability Benefits

UNITED STATES
Individuals with CMyD and MD may be eligible for disability payments (money) from the government.  There is a web site that gives more information and can help you apply. This information only pertains to US citizens.

It might be difficult to qualify for these benefits. The government is trying to cut back on the amount they pay for disability. The help of an expert might be required.

WEB SITE FOR SOCIAL SECURITY DISABILITY

They have a book you can buy for $49.95 plus $7 shipping. The book is called “How to apply and win Social Security Administration Disability Benefits“. Also, if you wish they can assist in navigating the complex process of applying for benefits.

The General feeling is that a person in the US should apply for disability as soon as they are unable to work a standard 8 hour day for 5 days a week. It is important to apply as soon as possbile. With the complexity of a DM case you might want to consider a professional that would help you.

They don’t charge upfront but will take your case on a fee if they win basis.

Frederick Johnson 410/740-0454 for more info

ENGLAND
During our visit to the Muscular Dystrophy conference in England we were able to talk with the social services people in England. For a disability the social security type system in England pays the individual more than what they were making when they were working. A nice system that perhaps the USA might adopt. There is additional information on social services at the 12th annual conference web site about this disease..
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Doctors Knowledgeable about DM

We are continuing to list doctors that have a working knowledge of DM.  Most doctors will not have any patients that have had DM because the incidence of the disease is about 1/8000 and the average doctor will have less than 3000 patients. Usually about 2000 patients in multigroup practice. Thus the burden is on you to educate the doctor or find a doctor that has seen many DM patients. These doctors come to us from our members reporting from their experience. If you know a good doctor please let us know so we can add them to the site.

From:  Janet Moravec mspootsma1@aol.com

I would like to submit to you two doctors who I found to be very interested  and knowledgeable. They both are affiliated with the University of Florida in Gainesville, FL, Shands Medical Center. I asked for their approval to submit their names and it was approved. These are  the doctors I am going to. I have great confidence in their abilities, and as you know that is half the battle.

Melvin Greer, MD,  Professor and Chairman – Dept of Neurology
e-mail – greerm@neurology.ufl.edu
phone – (352) 265-8408

M. Tariq Bhatti, MD, Associate Professor, Neuro-opthalmology Service
Dept of Opthalmology
e-mail – tbhatti@eye1.eye.ufl.edu
phone – (352) 846-2102

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Education

EDUCATION

For some families the diagnosis of Myotonic Dystrophy is made via their child who may have some learning disabilities. Myotonic Dystrophy affects learning and makes it more difficult for children to learn certain tasks. For some reason some tasks are more difficult for these children. Here is some additional information on Learning disabilities from the Netherlands

Its  important to begin education at the earliest level. Birth-3 programs are available in the USA. This intensive help will optimize the educational structure for the child. Most children will begin in Special education classes before kindergarten. Because of the child’s ability to imitate, mainstreaming in regular school should be considered. Here is some specific information:

From the MDA USA: Dr. Ed Goldstein MDA Clinic Director Atlanta Georgia

Q: My child is in an integrated kindergarten. Are there any specific strategies for learning that the school should be aware of?

A: The Spectrum of mental development in children with CMD is quite different from that of the general population. In some studies, 2/3 of these children are mentally retarded (MR); meaning that they have a persistent, global delay in their cognitive development. In addition to varying degrees of mental retardation, many CMD have learning disabilities (LD). These are problems in selected areas of mental processing, which interfere with certain aspects of the educational process. Many of the patients that I follow have a component of Attention Deficit Hyperactivity Disorder (ADHD), which is typified by hyperactivity, impulsivity and distractibility. In the absence of significant heart disease, these ADHD symptoms can sometimes be treated with the use of stimulant medications like Ritalin or Dexedrine. Finally CMD patients are described who have elements of Pervasive Development Disorder (PDD) which is characterized by decreased reciprocal social interaction. What I typically recommend for children is the performance of psychometric testing by a developmental psychologist. This is a test of his mental capabilities and will define the elements of MR, LD, ADHD, PDD and provide insight into the nature of some behavioral problems. This type of testing is not inexpensive, often costing $1000 to $2000. However, good Psychometric Testing is the only way that you can gain appropriate insight into the nature of your child’s thought process, thereby permitting you to make informed decisions about school environments, rehabilitative therapies and behavioral interventions. Your local school system may provide this testing for you.

The variability juvenile and congenital forms of the disease will make management of the educational process unique to each child. Some of the important issues to deal with are the behavioral issues that arise.  Things like incontinence, learning disability, speech problems need to be dealt with. We are still searching for more information on these subjects.

More information on education and learning strategies are needed. If you are an educator please write and send information about what you are doing in your classroom!

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Encopresis

Your Child and Encopresis
Susan Poulton, RNC, ARNP, CNS II and Jeanne Torrens, RN, MSN, CNS II
Updated Spring 2001 by Joni Bosch, PNP

What is encopresis?

When a child who is older than four regularly has stool or bowel movement accidents, the condition is called encopresis. Chronic constipation often leads to encopresis. The stools may be firm, soft, or liquid. We don’t always know why an individual begins to have encopresis.

What causes encopresis?

During toilet training, a child learns how to control bowel movements. During this process, the child is taught to recognize signals from the muscles and nerves that warn it is time for a bowel movement. If something interferes with these signals, then stool accidents will eventually happen.

Encopresis occurs when feces, or stools, are allowed to build up in the colon (or large intestine) over a period of time. This may happen because a child does not have regular bowel movements, or because the bowel doesn’t empty completely on a regular basis. Over time, the feces that stay in the bowel become large, hard, and dry. At this point, having a bowel movement may be painful. Liquid feces often leak out around the hard, dry stool. The colon and rectum stretch. The stretched muscles and nerves give fewer and fewer signals to the child’s brain about the need to have a bowel movement. This decrease in signals results in stool accidents, and the colon and rectum often don’t empty as they should (see Figure 1).

1. Feces or bowel movements move through the colon on their way to the rectum.

2. If these feces aren’t passed…

3. … they will collect into a large mass in the rectum. This can cause a condition known as megacolon. More liquid fecal matter will sometimes run down around the more solid feces.

4. If the child’s sphincter relaxes, liquid waste may leak enough to soil a child’s clothing.

How can I tell if my child has encopresis?

You should be concerned about the possible development of encopresis if you find the following:

Your child has stool accidents or liquid stools at times other than during an illness.

Your child complains about clothing that is too tight around the waist. If you press gently around the edges of your child’s stomach or abdomen, you may find a mass that feels almost like the links of a sausage. The mass might be on one side, or might have the shape of a large, upside down U that runs up one side of the abdomen, across the top and down the other side.

Your child complains of pain related to having a bowel movement. Sometimes a child will tell you that he or she can’t go to the bathroom because it hurts too much.

Your child has a poor appetite. A child with encopresis may complain of a stomach ache, heartburn, or cramps; may feel too full to eat; or may vomit.
Why is encopresis a concern?

Untreated encopresis can lead to several conditions that threaten the health of your child. These conditions include:

Megacolon, a disorder in which the colon gets bigger because of the large amount of feces that stay in the bowel. As the colon gets bigger, its muscles and nerves lose the ability to signal the need for a bowel movement.

Bleeding and cracking of the skin, called fissures, may occur around the rectum as the result of passing large, hard, dry stools. This can be very painful.

Blood may appear in the stool, due to the irritation of the colon lining caused by hard, dry, compacted feces.

Children may develop urinary tract infections and wetting accidents when the overloaded colon presses on the bladder, or prevents the bladder from emptying completely.
Treatment
How is encopresis treated?

The success of any treatment for encopresis will depend on the two factors:

The child’s ability to carry out the treatment plan.
The family’s support of the child.

Encopresis cannot be cured overnight.
It is important to understand what encopresis really is. The problem is not “in the child’s mind.” It is not a “behavior problem.” Encopresis happens because a child’s colon doesn’t work as it should.

The child and the family will need to be patient. It is important that the child isn’t blamed or teased about this condition. Instead, the child should be praised as each step of the treatment is successfully carried out.

The treatment of encopresis begins with the use of enemas to clean out the colon and rectum. When this has been done, the child will need to regularly take laxatives to soften stools and promote bowel movements. The child won’t become addicted to the laxative, or dependent on its use. Laxatives are needed to help clear out the feces. Then the laxative helps the colon begin to work correctly.

In addition, the child will need to use a regular toileting schedule. After each meal and at bedtime, the child must sit on the toilet and try to have a bowel movement. This goal is to establish a pattern of regular bowel movements. It is easier to have a bowel movement after meals because of the gastrocolic reflex that occurs when we eat. As food goes to the stomach to begin to be digested, this reflex makes the intestines contract to move the stool along so that there will be room for more digested food.

As part of toileting, a child will need to practice the Valsalva maneuver. This is the technique of holding your breath while tightening your abdominal muscles and bearing down to have a bowel movement.

Fiber

Fluids

Exercise
Diet and exercise are important.

A child should eat foods that are high in fiber, like fresh vegetables and fruits.
They should drink plenty of fluids throughout the day.
Exercise is also important in starting and maintaining healthy bowel habits.
These three factors — fiber, fluids, and exercise — help keep stools soft and bowel movements regular.

The successful treatment of encopresis typically takes from six to twelve months. It is important to continue both the bathroom schedule and the use of laxatives. This should be done for at least 6 months, while the colon heals.

Remember that even after treatment ends, a child must maintain good eating, exercise, and toileting habits. When this is done, encopresis usually will not recur.

Please note — Before using this information, please discuss it with your family health care provider.

Find more information about this subject in the online catalog of our Disability Resource Library.

“Your Child and Encopresis: Easy Reading Flier”

 

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Estate Planning

Overview Of Estate Planning Issues by Lawrence A. Frolik, J.D., L.L.M Professor of Law University of Pittsburgh, School of Law


When parents have a son or daughter with any type of disability, they must plan their estates carefully to best benefit that child. How parents leave their assets after death may greatly affect the quality of life for their son or daughter with special needs. This article presents basic information to help parents begin considering the very important issues involved in developing an estate plan when the future of a son or daughter with a disability must be taken into account.

Many families believe that they have so few assets that an estate plan is not necessary. This is not true. We often have more assets than we realize, although some assets may become important only after our death. The most notable asset of this type is life insurance. Therefore, whether you consider yourselves a family of substantial means or with little or no assets, estate planning should be done.

How the Type of Disability Affects Estate Planning
Disabilities, of course, can take many forms and have varying degrees of severity. The nature and severity of your child’s disability will affect the nature of the estate plan that you, as parents, develop.

Physical disabilities or health impairments. Many individuals have physical disabilities or health impairments that do not affect their ability to manage financial or other affairs. If your son or daughter has such a condition, how to leave your estate depends on a number of factors. The primary factor will be whether or not your son or daughter receives (or may one day need to depend on) government benefits such as Supplemental Security Insurance (SSI), subsidized housing, personal attendant care, or Medicaid. If your child does receive (or may one day need to depend on) government benefits, then it is most important to create a special estate plan that does not negate his or her eligibility for those benefits. How to do this is discussed in some detail in this NEWS DIGEST.

On the other hand, you may have a son or daughter with a physical disability or health impairment who is not eligible for or who is not receiving government benefits. In this case, you may be able to dispense with elaborate planning devices and merely leave your child money outright, as you would to a nondisabled child. If you believe that the disability may reduce your son or daughter’s financial earning capability, you may want to take special care to leave a greater portion of your estate to this child than to your nondisabled children.

There are some exceptions to this simplified approach, of course. One exception is when parents are somewhat fearful of their son or daughter’s financial judgment. If you are concerned that your son or daughter with a disability may not responsibly handle an inheritance, then you can utilize a trust, just as you would for a nondisabled heir. Another exception is if your child’s disability or health impairment involves the future possibility of deteriorating health and more involved health care needs. While your son or daughter may be capable of earning money and managing an inheritance at present or in the immediate future, in twenty or thirty years time deteriorating health may make it difficult for him or her to maintain employment or pay for health care. Government benefits might then become critical to your child’s security. Remember, benefits include much more than money; your child may also be eligible for valuable services such as health care, vocational rehabilitation, supported employment, subsidized housing, and personal attendant care. If, however, he or she acquires too many assets through inheriting all or part of your estate, he or she may be ineligible for these benefits. Therefore, in order to protect your son or daughter’s eligibility for government benefits at some point in the future and to provide for his or her long-range needs, you may need to consider establishing a special estate plan.

Cognitive disabilities or mental illness. If your son or daughter’s disability affects his or her mental capability, the need to create a special estate plan is more clearcut. Mental illness and cognitive disabilities often impair a person’s ability to manage his or her own financial affairs, while simultaneously increasing financial need. As a result, you must take care to ensure that there are assets available after your death to help your son or daughter, while also providing that the assets are protected from his or her inability to manage them. More information will be given later in this article about various ways to accomplish this. First, however, let us take a look at some basic information about wills and why a will is so important.

Writing a Will
All parents, but particularly parents of individuals with disabilities, should have a will. The object of the will is to ensure that all of the assets of the deceased parent are distributed according to his or her wishes.

If at death you have no will, your property will be dispersed according to the law of the state in which you live at the time of your death. This law is called the state’s law of intestacy. Although laws of intestacy vary from state to state, in general they provide that some percent of assets of the decedent passes to the surviving spouse and the rest is distributed to the children in equal shares. Writing a will is highly recommended, since the laws of intestacy are rarely the most desirable way to pass property to one’s heirs.

Although it is theoretically possible for any individual to write a will on his or her own, it is unwise to do so. Because of the technical nature of wills, it is highly advisable to have a lawyer prepare one. Parents of individuals with disabilities particularly need legal advice, because they often have special planning concerns. If you do not have a lawyer, you can call the local bar association, which will provide you with the name of an attorney in your vicinity. It is preferable, however, to contact a local disabilities group, which may be able to put you in contact with an attorney familiar with estate planning for parents of persons with disabilities. Not all lawyers are familiar with the special needs associated with caring and providing for individuals with disabilities. Before you hire a lawyer, be sure to find out if he or she has ever prepared estates for other parents who have sons or daughters with disabling conditions. If the lawyer has not, it is best to find a more experienced attorney. The cost of an attorney varies according to the attorney’s standard fee and the complexities of the estate. The attorney can quote you a price based upon an estimation of the work. If the price quoted is beyond your immediate means, it may be possible to negotiate a payment plan with the attorney, whereby you pay over time.

When making a will, however, remember that not all the assets you control are governed by a will. Joint property with right of survivorship, for example, passes independently of a will. If, for example, Tim and Sarah own a house as joint owners with rights of survivorship, upon Tim’s death Sarah automatically inherits the house without regard to what Tim’s will might say. Similarly, life insurance is paid out to the named beneficiary without regard to the will. The insurance is a contract between the owner and the insurance company, and the insurance company must pay the insurance to whomever the owner states. Many individuals have death benefits under an employer-provided pension plan. These, too, are not governed by the will but are paid to whomever the employee has designated. (Note: If you create a special estate plan to provide for your child with a disability — in particular, if you set up a special needs trust — review any life insurance policies you have purchased, and be sure that you have not designated your child as a beneficiary. The same is true for relatives who may have designated your child as the beneficiary of their policies.)

Personal property, such as clothing, furniture, and household effects, should be distributed by the will independently of the often more valuable assets such as stocks, bonds, and real estate. Personal property is often of great sentimental importance, but may have little financial value. To avoid disharmony after the death of the last parent, it is generally a good idea to make an equal division of the personal property among the children. In some cases, the parents may wish not to include the child with the disability in the division, particularly if that might disqualify this person from government benefits. However, in most cases it is advisable to leave the person with a disability a share of the personal property so that he or she does not feel excluded.

Remember, a will goes into effect only upon the death of the person who created it. Until death, the creator of the will can freely revoke, alter, or replace it.

How To Start Planning Your Estate: What to Consider
When parents have a son or daughter with a disability, they should give careful consideration to developing an estate plan that provides for that person’s future best interests. Here are some suggestions that can help parents approach planning their estate when a son or daughter with a disability must be taken into consideration.

First: Realistically assess your son or daughter’s disability and the prognosis for future development. If necessary, obtain a professional evaluation of your child’s prospects and capability to earn a living and to manage financial assets. If your son or daughter is already an adult, you should have a fairly clear understanding of his or her capabilities. But if your child is younger, it may be more difficult to predict the future. In such cases, you should take a conservative view. It is better to anticipate all possibilities, good and bad, in such a way that you do not limit your loved one’s potential or set him or her up for unrealistic expectations. Remember, too, that you can change your estate plan as more information about your child becomes available.

Second: Carefully inventory your financial affairs. Estimate the size of your estate (what you own) if you should die within the next year or the next ten years. Keep in mind that the will you write governs your affairs at the time of your death, and so it must be flexible enough to meet a variety of situations. Of course you can always write a new will, but you may never actually write it due to hectic schedules, procrastination, or oversight. Thus, the will you have written must have sufficient flexibility to meet life’s everchanging circumstances.

Third: Consider the living arrangements of your son or daughter with a disability. Your child’s living arrangements after your death are of paramount importance. Every parent of an individual with a disability should give thought to the questions, “If my spouse and I should die tomorrow, where would our child live? What are the possibilities available to him or her?” The prospective living arrangements of your son or daughter will have a tremendous impact on how your estate should be distributed. Involved in answering the question of living arrangements is whether or not your child will need a guardian or conservator to make decisions for him or her after your death. If you conclude that a guardian or conservator is necessary, you should be prepared to recommend a potential guardian or conservator in your will.

Fourth: Analyze the earning potential of your son or daughter. It is important to determine how much your child can be expected to contribute financially, as a result of employment. If he or she is currently employed, does this employment meet all of his or her living expenses, or only some? If your child is presently too young to be employed, you will have to project into the future. In many cases, even if your son or daughter is employed or expected to be employed at some point in the future, he or she will require additional financial assistance.

Fifth: Consider what government benefits your son or daughter needs and is eligible to receive. Support for a person with a disability will usually come from state and federal benefits. These might be actual case grants, such as social security or supplemental security income, or they might be in-kind support programs, such as subsidized housing or sheltered workshop employment.

In brief, government benefits can be divided into three categories. First are those categories that are unaffected by the financial resources of the beneficiary. For example, social security disability insurance (SSDI) beneficiaries receive their benefits without regard to financial need. Regardless of what the parents leave to a son or daughter with a disability, the social security payments will still be forthcoming once the person has qualified for them.

Second, some government benefits, such as supplemental security income (SSI) and Medicaid, have financial eligibility requirements. If a person with a disability has too many assets or too much income, he or she is not eligible to receive any or all of these benefits. Someone who is eligible due to a lack of financial resources can become ineligible upon inheriting money, property, or other assets. This would lead to a reduction or termination of the SSI benefits for that person. Therefore, if your son or daughter is receiving government benefits that have financial eligibility requirements, it is important to arrange your estate in a manner that will minimize his or her loss of benefits, especially SSI or Medicaid.

Finally, there are government programs available to individuals with disabilities where payment for services is determined according to the person’s ability to pay. Many states will charge the individual with a disability for programmatic benefits if he or she has sufficient assets or income. The most striking is the charge that can be levied against residents of state mental institutions. For example, if a resident of a state hospital inherits a substantial sum of money, the state will begin charging the resident for the cost of residency in the state hospital and will continue to charge until all the money is exhausted. Yet the services provided will be no different from the ones that he or she was previously receiving.

Establishing a Will: Four Possible Approaches
Having decided what your son or daughter needs and what you own, you can now consider how best to assist him or her. There are four possible ways to do so.

First, you can disinherit your son or daughter with the disability. No state requires parents to leave money to their children, disabled or not. If your assets are relatively modest and your son or daughter’s needs relatively great, the best advice may be to disinherit your child by name and have him or her rely upon federal and state supports after your death. This may be the wisest decision, particularly if you wish to help your other children. Instead of complete disinheritance, you might leave your son or daughter with a disability a gift of modest but sentimental value, such as his or her bedroom furniture. The value of the gift will be small enough not to affect government benefits, but it will indicate your love and concern.

Second, you can leave your son or daughter with a disability an outright gift. For example, suppose your son Tom has a physical disability. You might write a will that states, “I leave one-third of my estate to my son, Tom.”

If your child with a disability is not receiving (and is not expected in the future to need) government benefits, this may prove to be a desirable course of action. Your son or daughter, if mentally competent, can hire whatever assistance he or she needs to help with managing the gift. But if your son or daughter has a mental illness or cognitive disability, an outright gift is never a good idea, because this person may not be able to handle the financial responsibilities. If you want to leave a gift to support your child, the use of a trust is far preferable.

Third, you can leave a morally obligated gift to another of your children. Suppose, for example, that the parents have two children: James, who has mental retardation, and Mary, who has no disabilities. The parents leave all of their assets to Mary. Legally, Mary now owns all of the parents’ assets and James owns nothing. But prior to their deaths, the parents told Mary that, although they are leaving everything to her, they expect her to use at least half of the money to assist James in whatever way Mary thinks best. They left the money to Mary, because they do not wish James to lose his government benefits, and they think that there are ways that Mary could use the money to help her brother. For example, Mary might provide special gifts to James on holidays or pay for special assistance for James that would not be provided by the government benefit programs. The gift is a moral obligation to Mary, because legally she can ignore the parents’ wishes and do whatever she wants with the money: It is hers. It is only her conscience that guides her. After the parents’ death, if Mary chooses to ignore James and use the money for herself, there is nothing James or anyone else can do about it. Morally obligated gifts are often used by parents with modest-sized estates for whom a trust does not seem desirable. The danger of morally obligated gifts is, of course, that the morally obligated recipient — in our example, Mary — may ignore the wishes of the parents. Even if Mary does not deliberately ignore the obligation, she may encounter circumstances that make it impossible for her to carry out her parents’ wishes. Suppose, for example, that Mary or her children become ill or are in great financial need. She may feel under pressure to use the money for her own family, even if it means that James goes unhelped. Moreover, if Mary dies before James, it is possible that Mary’s family will not carry on the duty to help James. Finally, in case Mary is divorced, the money may be lost to her former spouse in a settlement.

Morally obligated gifts, therefore, are not a complete solution. They can be useful, however, especially when the parents have a modest amount of money and do not expect a lifetime of care for their son or daughter with a disability. Rather, they merely want their nondisabled sons or daughters to use some of the inherited money to assist their sibling with special needs.

Fourth, you can establish a trust for your son or daughter with a disability. For many parents who have a child with disabilities, the use of a trust is the most effective way to help that individual. The point of a trust is to keep assets in a form that will be available to your son or daughter but that will not disqualify him or her for government benefits for which he or she might otherwise be eligible.

The article in this NEWS DIGEST entitled “The Special Needs Trust” discusses in some detail what a trust is, the circumstances under which a trust is advisable, and issues to consider when establishing a trust.

In A Parent’s Words
It had been in the back of my mind for years, soon after I found out my son Samuel had this lifelong disability. What would the future hold for him when I wasn’t there anymore to be his advocate, friend, and supporter? It was both a big and little worry. Big, because it gave me a hole in my gut whenever the questions crept in. And little, in the sense that I tried not to think about it. I’d think: I’ll worry about that tomorrow, next week, when he’s older, when I’m older.

Of course, I’ve done things to prepare Samuel for that future he’s going to have without me, things like teaching him how to wash clothes and shop. But could I write a will? Make an estate plan? No, for years, I dodged that one totally.

Then, when his voice started to change, it suddenly hit me that he was growing up, that he was older now. That future I was always worrying about, and refusing to worry about, was beginning to arrive. I talked with my husband, and I found out he’d been worrying about Sam’s future, too. So he and I went to our lawyer. I was so nervous, to bring all the questions out in the open and look at them. No wonder I’d shoved them under the bed for so long!

But you know, it’s funny. Now that we’re finished setting up our estate and only need periodically to review our plans, I feel like an enormous burden has been lifted up from me. The big, black, scary shadow is gone. Well, not totally gone, I suppose. I still worry about Samuel, what will happen to him in his life. I guess every parent does that. But now I don’t worry in the same way. I know I’ve done all I can do for that part of his future, something that was extremely important to do, and I am very relieved. Now I feel like we can deal fully with the present day and see to the other things that need to be done to prepare Samuel for life as a man. And that’s very exciting.

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