The following are examples of effective letters that others have sent to their government representatives. I include them here to give you an idea of how you can structure your own letter. Remember that you are dealing with a bureaucracy and that persistence is what counts. Often volume is everything (the squeaky wheel solution).

Jean's Letter   Olav's Letter

From: Miller Jean E on Sat, Jan 25, 1997 4:09 PM
Subject: 1998 Proposed Budget Cut/Home Health
To: president@whitehouse.com
Cc: hunt-dis@sjuvm.stjohns.edu

25 January 1997

Dear President Clinton:

Your new administration recently announced that the proposed fiscal 1998 budget, to be released next month, would place strict new limits on payment for home health care citing the Government's costs for such care climbing at a rate of 23 percent a year.

This proposal would cut reimbursement to home health agencies in the short run, over the next 2 years, by producing lower payments by the Government for each visit which is currently authorized at 35 hours per week. For the year 2000 and beyond, the Government would devise a system to cap spending by adopting the fixed payment system similar to the prospective payment system used by Medicare for hospital treatment. This might, for example, impose a maximum of 12 visits for 30 days for patients recovering from strokes, diabetics, unstable heart conditions etc. The proposed change to 12 visits per month equates to more than an 80% reduction in services!

What is not clear in this proposal is what would be the proposed impact on home health care authorized for long term care/terminally ill patients being cared for at home? How does your plan intend to differentiate between short term, rehabilitative care, and long term permanent illnesses? Or does it?

Part of the significant growth in home health visits between 1984 and 1994 are directly attributable to an increasing aging population and significant medical discoveries which are prolonging life expectancies. This trend has been known by current and past administrations for years. That, combined with more families deciding to care for their loved ones at home rather than placing them in a nursing home, has increased the need for home health support. Families do this at a great financial, as well as emotional, sacrifice due to the surmounting costs for home health aides NOT covered by Medicare/Medicaid.

There aren't any tax benefits or incentives which compensate middle income Americans to care for their loved one at home, other than direct medical expenses. When a taxpayer pays $6.00 to $12.00 per hour for home health care for their loved one in order that they, the healthier one, may continue to work, shop or otherwise contribute to the taxes of this country, it is often without reimbursement in their taxes.

I'm sure the nursing home and managed care industry has significant lobbying representation opting for these changes since they are the only ones to benefit from families not being able to care for their loved ones at home. Are proposed budget cuts intended to force families into institutionalizing their loved, at a greater cost to them, their state and the federal government?

As the sole-source provider for a terminally ill young adult being cared for at home with love and in familiar surroundings, and as a continuous taxpayer since 1961, I must wonder if the speech you made June 14, 1994 (below) were just "words" written for you to speak without sincerity or have you just plain forgotten home care should be a government as well as a family mission?

Sincerely
Jean E. Miller
(address)
(phone)
(e-mail address)

The responses to this letter are published on Olav's Web site.

January 27, 2000

To whom it may concern,

My name is Olav Froelke and I am thirty-five years old. My wife Kathy, who is forty years old, was diagnosed with Huntington's disease about two and a half years ago. I have found that it is a terrible thing not only to get sick or be disabled but that this country is really not setup to deal with the different needs that arise from such catastrophes in life. When I first took my wife to apply for social security and to get her on Medicare, I was told that she had to wait two years after applying just to get on Medicare at all. That seemed an atrocity in itself! People who become disabled usually do not choose this for themselves.

About 7 months ago, my wife had to be hospitalized for 8 days due to her illness and complications of the disease. It cost my father and myself a business that we had undertaken and my only income due to the fact that I needed to be there for her. I was unable to fulfill my business obligations and be with my wife at the same time. The business we were in would have taken me on the road and out of the state. My wife's illness has already progressed to the point that she needs to be under constant supervision, which means I have been staying home in order to tend to her needs. I finally had to resort to Medicaid because her medication expenses alone come to nearly $1300.00 per month for one prescription.

Most people that I have counseled with concerning this situation have advised me to divorce my wife. That way, she can keep the type of care she is getting now and they feel that would rectify our financial situation. In other words, in order to receive help from programs such as Medicaid, our options are to stay at or below the level of poverty or for us to get a divorce. I don't believe those should be the only options for anyone, especially for those of us who still believe in keeping our marital commitments and fulfilling our daily financial obligations. It seems to me, that everyone's situation is uniquely different. The needs that they are trying to have met, the level of help that is required and the differences in the amount of assistance that different circumstances require. Therefore, they need to be looked at and assessed from an individual point of view.

It amazes me that we will put people in nursing homes but we can't find any funds to help the people that are willing to take care of loved ones at home. The government will pay out thousands and thousands of dollars to a nursing home but isn't set up to help pay the cost for a family member to stay home and take care of their loved one. That makes no sense! I question.. Where would I like to live out my life if I were disabled? Who would I like to be with if I were disabled? What kind of life is it to be in a nursing home when I could be at home if I was disabled and someone who would be willing to take care of me?

The State of Utah and this country are always preaching family unity but then we have laws and/or rules like the ones that Medicaid goes by which make it almost impossible to be a traditional family. The laws and rules that are currently in place seem to do more harm in regard to families at times, rather than good. When the answer is to pull the family apart, does that not pose a question as to the validity of the solution? Other people in similar situations as my wife and myself feel that the government of this country does not take these matters very seriously. Maybe that is because those in our government who could do something about this, have NO idea what it is like to be in this situation. It would be nice to feel that the human aspects and needs of the American people are the first priority of our country. It amazes me that we are constantly hearing about the billions of dollars that we send to other countries and yet we are not able to take care of the basic needs of the people who live here, in our own backyards.

Medical expense should never become an issue in this country. Necessary medical bills are something that should never need to be put on a credit report. How many people incur a medical bill unless it is for a health related issue or need? The harassment from bill collectors is enough to put a person into the hospital! In previous years I have had to file for bankruptcy twice because of medical bills. That was an appalling reason for me to have to file bankruptcy. We are the biggest country in the world. We have some of the best resources in the world. But in my opinion we have one of the worst managed health care systems.

My wife was previously uninsurable due to this horrible disease. That was, until the president implemented the reform bill not too long ago. However, the one thing they all seemed to forget is that the cost for those who need this is unaffordable to those same people! The premiums in conjunction with co-payments and deductibles just for prescriptions can add up to more than people can afford. I don't understand how we in this country allow insurance companies to profit so highly off of someone else's misery.

During the last six months I have been diagnosed with double hernias. I am unable to take care of the hernias since I have no money or insurance. I could go to work, but then who would take care of my wife? I could go and earn some money but then I'm told that I may earn too much for my wife to qualify for Medicare, which pays her medication and doctor expenses. I have called around and spoken to many people. All I have gotten so far is the run around, but no answers. I keep getting told "that is not our department", or I get transferred from place to place, or I'm constantly being transferred to voice mails and no one ever calls back.

Please think about these things. I doubt anyone can really understand what this is like or how it makes one feel to be given these cards in life.not, unless you have ever experienced or lived through, with this. But, I would ask you to try even if it's just for a minute. I would be willing to explain my story in greater detail if it would help to find some answers. I am not in search of answers for only myself, but for others as well that I have come to know through my wife's illness.

Thank you for taking the time to read this,

Sincerely,

Olav Froelke