In this issue:
Its been a while, so weve got a lot to cover! First of all, were sorry this newsletter has taken so long to get out. Among the reasons is the fact that weve just moved into a new house. Even though we moved just two blocks down the street, it was a LOT of work. (Please note our new address is 2602 Quaker Dr., Texas City.) Thanks to those of you that provided us with input on building an accessible house. If anyone else is considering this, let us know for we have lots to share!
Perhaps the biggest news is continued progress in locating a gene responsible for X-linked myotubular myopathy. Weve attached a paper by Drs. Mandel, Herman and others describing their progress. (Warning! Its written in geneticist-talk and its hard to read and follow.) Also, as mentioned in the accompanying interview with Dr. Herman progress is being made in finding the genes responsible for the non X-Linked MTM. Also, researchers are learning more about the other health effects that often seem to accompany MTM. Dr. Herman is planning to publish information about this in the near future. In order to update our data base and help Dr. Herman in this work, weve attached a brief questionnaire. Your help in filling this out and sending it back to us is much appreciated. Please complete and return!
Weve added lots of families in the last year or so! Our list of families now has over 120 names! Weve got cases from 38 states as well as Canada, Japan, UK, Argentina, Sweden, Italy and elsewhere.
An area of interest wed like to focus on in our next newsletter is scoliosis. We know a lot of you have tried braces -- some successfully, some not. Others have tried surgery. IF you havent had a problem with this yet, there is a good chance you will in the future. Weve included a special questionnaire on scoliosis that we are asking families that have dealt with this to fill out. Well put the results in the next newsletter. (which we promise wont take so long to get out!)
Our site on the Internet has been a real success. We get lots of inquiries this way. Even though we have trouble keeping it up to date, it is still the worlds most comprehensive source of information about managing kids with myotubular myopathy. (Thats scary!) One thing wed like to add to our web page is a list of stories or anecdotes written by families with kids with MTM. We may even be able to include pictures. (At least well try.) If you have a story youd like to tell please write it down on the attached form. If you want to send a picture, too, that would be great. We want a wide range of experiences with a wide range of outcomes. Therefore, we want to hear from you if your kid is doing well or not so well. We also want to be sure and include stories from parents who have lost children to MTM. Our goal is to present to the world the wide range of outcomes for these kids. We also want to show that this disease affects real people, real families. Please help us with this!
As is mentioned elsewhere in this newsletter, we have turned this little resource group into a non-profit corporation. Our goal in doing this is to be able to get grant money from different corporate foundations and other funding sources.
In creating the corporation weve officially changed the focus of the group from X-Linked MTM to all forms of myotubular myopathy. We did this for several reasons: First, the treatment and management of the different forms is very similar and second, in many cases it is not clear whether the form is X-linked or not. In reality, weve been offering support to all forms of MTM anyway. So we just decided to make it "official."
Bye for now. Please keep in touch.
Pam, Gary & John
Interview with Dr. Gail Herman
by Gary Scoggin
For those families with home nursing care or contemplating or trying to get home nursing care, we have compiled some of what weve learned over the last eight years.
There are two fundamental issues when getting nursing care. The first and most critical issue is, "Who pays?" The second issue is, "Agency or Direct Contract?"
Funding is the hurdle that every family with home nursing must address. Since home care is quite expensive and beyond the means of almost every household, families must look either to private insurers or public agencies to fund home nursing care.
Private Insurance: We have seen a wide range of willingness among insurance companies to pay for home nursing. Many are willing to fund nursing care to a reasonable level as dictated by the needs of the patient. This includes, in some cases, around the clock coverage. Other insurance companies are willing to fund home nursing on a more limited basis, perhaps during nighttime only. At the other end of the spectrum, some insurance companies are unwilling to fund any home nursing. In these cases, they maintain that any and all nursing care is for respite only and not medically necessary. This ignores the fact that many kids, especially those that are vent dependent, need constant monitoring and supervision -- even while sleeping.
If the insurance is provided as part of a group medical plan through an employer, it is sometimes possible to get nursing coverage approved by going around the insurance company and working directly with the employer. In these cases, the employee, employer and insurance company agree to an "out of contract benefit", i.e., a benefit not normally included in the medical plan. The key to achieving this is to demonstrate that home nursing care is a lower cost alternative. To make this demonstration, the usual argument is that the alternative to home care is hospitalization in a critical care unit. Insurance companies understand the cost of hospitalization and will often agree to fund home nursing if this argument can be credibly made.
A major concern with most private and group insurance policies is the lifetime maximum benefit. This is a cap on the total dollars an insurance company will pay out in a persons lifetime. These maximums are often in the range of 1- 2 million dollars. With a few expensive hospitalizations and a few years of private duty nursing care, these caps can be easily reached. It is then usually very important to use insurance dollars wisely in order to stretch the insurance benefits out as long as possible.
Public Funding: Public funding usually comes under the Medicaid program. To complicate things, since Medicaid benefits are administered by the states, eligibility and benefits vary widely. To qualify for most Medicaid programs, family income and assets must be under pre-set limits.
However, there is one Medicaid program that provides nursing care where family income is not considered. This program, usually called the "Model Waiver" or "Katie Beckett Waiver" (the name varies from state to state) provides respite care to the parents of chronically ill children and is contingent only on the assets of the child and not the family. This program usually provides a set amount of dollars per year to be spent on nursing care for the child. The family, in conjunction with a social worker, decides how these dollars will be spent. The main drawback to this program is that often the dollars budgeted per child are not enough to completely meet a familys home nursing needs. However, this program can provide a much needed supplement which enables insurance dollars to be stretched further.
Agency or Direct Contract?
Once the decision to obtain home nursing care has been made, the next question is whether to use a nursing agency or directly contract with individual nurses. Both approaches have their advantages and disadvantages. Often the funder for the nursing coverage (either an insurance company or a public agency) will dictate this decision. They often have standing contracts with home health providers. However, if the decision is yours, then there are a number of factors to be considered.
Nursing Agency: The main advantage in using a nursing agency is that you are relieved of the responsibility of hiring and firing, making payroll, recruiting and a thousand other headaches. These are not trivial matters. The disadvantage of using an agency is the inability to select nurses that you like and are comfortable with. Most nursing agencies will work with you on selecting nurses for your case. (If not, it is time to look for another agency.) However, tensions will inevitably arise over the suitability or qualifications of a particular nurse. The other disadvantage of using a nursing agency is cost: the agency is obviously in business to make a profit from providing care to cases like yours. Costs are significantly higher than direct contracting and the lifetime cap on your insurance is eroded faster.
Direct Contracting: Directly contracting for nursing care is not for beginners or for the faint of heart. To do this properly requires drawing up contracts, meeting a weekly payroll, handling the cash float between when you pay the nurses and are reimbursed by the insurance company, recruiting, orientation, etc., etc., etc. So why do this? Because the advantages are just as significant as the hassles. These include complete control over who works at your house, the ability to draw and retain better quality nurses and the freedom to structure patient care as you deem best (within the bounds of good medical and nursing practice, of course). Also, since there is no overhead, your lifetime cap on your insurance lasts longer.
Decisions on whether or not to obtain home nursing, how to get funding, and whether or not to hire an agency are tough ones indeed. We have helped a number of families sort all of this out in the past. If we can be of help to your family in any of this, please let us know!