Letters

Letter's I Received

Response 1 - US Senate - Senator Bennett

Response 2 - The White House - Daniel W. Burkhardt

This is the original letter I have written to various Government officials including the President and Vice President of the United States. It was also sent to Utah State Government officials and other Senator's etc. I mailed and e-mailed approximately 25 all together at this time.

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 contacting me regarding your difficulties with Medicare, Medicaid, and the Social Security Administration. I appreciate the opportunity to assist you in this matter.

I have been contacted by other individuals experiencing similar problems qualifying for Medicaid, and the "spend down" level they need to reach in order to qualify for assistance. The State of Utah does have some waiver programs which might help your situation. I suggest you contact Ms. Randa Pickle, Utah State Medicaid, at 538-6417 or toll free at 1-877-662-9651.

If you need further assistance please contact Swen Prior in my Salt Lake City office at 534-5933. Best wishes in your endeavors.

Thank you so much for your letter. President Clinton greatly appreciates the trust and confidence you have shown in him by writing.

To ensure that your concerns are addressed, I am forwarding your letter to the Health Care Financing Administration for review and any appropriate action. Please bear in mind that it may take some time to look thoroughly into this the issues you have raised. Should you wish to contact the Health Care Financing Administration directly, you may write to: Health Care Financing Administration, 200 Independence Avenue, S.W., Washington, D.C. 20201

This is in response to your letter to President Clinton regarding programs that are designed to pay individuals that are willing to provide personal care services to loved ones in the home, in addition to your other concerns. Please excuse the delay in this reply.

Medicaid is a medical assistance program that pays for basic medical care for persons with low income who are 65 or older, blind, disabled, members of poor families with dependent children, and in some States, certain groups of needy persons under 21. The

Medical program is partially funded by the Federal government, but each State runs its own program. Using broad Federal guidelines, each state decides who is eligible and what amount of medical care costs and services it will pay. With this in mind and taking into consideration your concern, the Health Care Financing Administration does not allow States to include family members as caregivers in their State plans. However, a State may elect to include personal care services as an optional Service. Medicaid regulations provide that personal care services under this option are defined as being provided in a recipient’s home, prescribed by a physician, and provided by a qualified individual who is supervised by a registered nurse, but who is not a member of the recipient’s family. This policy reflects the fundamental principal that Medicaid does not pay for services or resources that are already available to a person without charge. (Beginning October 1, 1994, States were permitted to make personal care services available in the home or other locations and available without physician prescription or nurse supervision. Family members were still precluded from providing services.)

Although the Health Care Financing Administration (HCFA) does not allow States to include family members as caregivers, such payment may take place under certain conditions under home and community-based waivers when the State demonstrates that: (a) the care would not otherwise be available at no charge; (b) the care is not from spouse to spouse or from parent to minor child; (c) the relatives or friends must meet the qualifications for providers of care; (d) payment is made to the relative or friend as providers only in return for specific services rendered, and (e) there is adequate justification as to why the relative or friend is the provider of care, e.g., lack of other qualified providers in remote areas. For additional information about this program, you can contact your local Social Services Office: 1-800-772-1213 or the State Medicaid Agency located at 140 East 300 South, Salt Lake City, Utah 84111: 1-801-526-4331.

If you are being harassed by debt collectors, you do have the right to pursue the matter through your State Attorney General's Office. They can be reached by dialing (801) 530- 6601 or toll free 1-800-721-7233.

With regard to your concern about insurance companies, you might want to address this matter to the officials in the State Insurance Commissioner's office. The address is 3110 State Office Building, Salt Lake City, Utah 84114 or call Mr. Merwin Stewart, Commissioner, Department of Insurance: 801-538-3829 You also mentioned that if you were to go to work and earn too much money, your wife may not qualify for Medicare, which you say pays for her medication and doctor expenses. Medicare eligibility is not based on an individual's income. Therefore, I feel you probably mean Medicaid, which requires that your income and resources be below certain standards according to the State's income requirement. The eligibility standards vary among States and different standards apply to different population groups within a State. The resource and income standards also include certain disregards or exclusions. If you have further questions regarding this issue, again you can contact your local Social Services Office or the State Medicaid agency mentioned above.

I do hope that this information addresses your concerns and is helpful to you and your wife.