50 States 50 Stories



Name: Heny Day

City: Huntsville, Alabama

Date of Report: 4.25.13

I am currently spending down my mother’s assets for long term care. I see many waste in the nursing home system and a lack of other community options to support the last few years of life.



Name: Debora Jameson Kenai

City: Kenai, Alaska

Date of Report: 5.08.13

I have an adult child with mental disabilities and feel that his services need to continue so that he can have a good quality of life for years to come.




Name: Bryan Ruth

City: Scottsdale, Arizona

Date of Report: 4.25.13

As a hospice chaplain I see people daily who are unable to pay for long term care during the final stages of their lives. They become a burden to their families causing them increased mental anguish and often times are unable to receive the proper care they should.




Name: Suzanne Bishop

City: Fort Smith, Arkansas

Date of Report: 5.05.13

I am 60 yrs old and totally disabled and long term care is too expensive for me. Nursing homes are terrible and only the owners make money. As a former medical personnel, I would rather die than live in one. Long term care would give me a better alternative as to who would take care of me when needed.


Name: Nancy Lowe

City: Benton, Arkansas

Date of Report: 5.05.13

As person with Multiple Sclerosis, I can see gradual deterioration, and know that it is only a matter of time until I will need access to services. If something were to happen to my spouse, that would become vital to me. As much as I hate the idea of being dependent, realistically I know that it will happen. For both my physical and mental well-being I need to know that help will be available.




Name: Dorothy Kane

City: San Diego, California

Date of Report: 4.26.13

My husband has pre-Alzheimer's and gastric cancer. We were lucky to have purchased a LTC policy for him before he got sick. I, however, was diagnosed with Multiple Sclerosis prior to that time and cannot find any insurance company that will sell me a LTC policy - pre-existing condition.




Name: Roberta Vose

City: Fort Morgan, Colorado

Date of Report: 4.25.13

My Mother needed assistance at home. It was so limited and together we couldn’t afford to pay it out of our pocket, so I missed a lot of work, lost money I needed for her care. We need better assistance for our Seniors. Social Security is not enough for what is needed.


Name: Jan Cross

City: Loveland, Colorado

Date of Report: 4.26.13

As a long-term Type 1 Diabetic and breast cancer survivor, it is impossible to obtain long term care insurance. That's not right.




Name: David Hunter

City: New Haven, Connecticut

Date of Report: 4.22.13

We are experiencing a bureaucracy that increases the cost of care, prohibits flexibility and consumer-friendly, while allowing individuals with financial resources to divest assets in order become "legally destitute", based on the current laws regarding Medicaid.


Name: Charles Matteson

City: Meriden, Connecticut

Date of Report: 4.25.13

My family just went through a very tough time with 2 of my sisters having to sacrifice their jobs to take care of my mother, and we still owe over $150,000.00 for aid services.



Name: Amy Kratz

City: Milton, Delaware

Date of Report: 5.11.13

I have a head injury/seizure disorder and also work with people with disabilities every day.



District of Columbia

Name: Alexandra Bennewith

City: Washington, DC

Date of Report: 6.12.13

The 44,000 members of United Spinal Association and the more than one million individuals with spinal cord injuries and disorders across the country must have access to quality home and community supports that meet their needs.


Name: Julia Shepherd

City: Washington, DC

Date of Report: 6.08.13

Long term support services should be more available and would allow broader options for people like me, who live with multiple sclerosis.




Name: Ileana Licea

City: Hialeah, Florida

Date of Report: 4.12.13

Two years ago when my mom had a brain aneurysm, she was finally discharged from the hospital (after a long battle) to be under my care. The hospital social worker told me I had to quit my job and take care of my mother (with no experience whatsoever) since no other services could be provided. I support this petition 100%. We need to change this sad reality.




Name:  Beth Bryant

City: Tucker, Georgia

Date of Report: 5.09.13

I have a 22 year old son with Down Syndrome. He has been out of high school for 1 year and is now stuck at home without any supportive services available to him. We are continually told that there is no funding available to help him become a productive member of society. Please don't forget about our children who have so much to offer but need some extra help to achieve their goals.




Name: Edwyna Spiegel

City: Honolulu, Hawaii

Date of Report: 4.25.13

We MUST protect our seniors with dignity and essential services.



Name: Julie Winter

City: Glenns Ferry, Idaho

Date of Report: 6.17.13



Name: Beth Cagen

City: Pocatello, Idaho

Date of Report: 5.11.13

I had to spend down my assets and that was quite frustrating. An overhaul of the system needs to take place. I am, however, finally able to receive all the services that I have needed for such a long time.




Name: Susan Hammer

City: Highland Park, Illinois

Date of Report: 4.25.13

I have experienced this problem as long distance caregiver to both of my parents. Even with long-term care insurance, had to spend down parents' assets. Father now deceased and mother with Alzheimer's finally had to leave her cherished home to live in assisted living. Expect our generation to experience similar issues without changes soon!




Name: Frances Lysaught

City: Michigan City, Michigan

Date of Report: 4.30.13

I have a disabled son who will always need long-term services to survive.



Name: Donna McNamara

City: Bettendorf, Iowa

Date of Report: 4.25.13

I believe long term care is essential since we are living longer. Many of us will need some type of long term care. I want my family to be able to assist me when possible, but there may come a time that other help is needed. I see too many people stripped of money, health care and dignity because of long term illnesses. We Americans can do better than this.




Name: Teresa Lemieux

City: Overland Park, Kansas

Date of Report: 5.10.13

I was an occupational therapist working full time in the field of developmental disabilities across the life span from 1976 to 2005. I was diagnosed with MS in 1984. I worked all those years with health care provided by my husband's business. I got divorced in 2007 and had to go on disability so I could have Medicare health insurance. I have always done volunteering and still do as

much as I can. I know I will need long term health insurance. I would have paid for private health care....but I was turned down because of my preexisting condition.




Name: Vicki Stone

City: Paducah, Kentucky

Date of Report: 5.09.13

I have a 21 year old son with autism. He is graduating from high school this  year. Now what? He can't be home alone and I need to work. Do I quit my job, go on welfare to be able to provide care for him. He still needs speech therapy, social skills training, life skills training, job training. What happens to him if something happens to me. The world has changed, families are scattered across the country, there are many single parents trying to cope on their own. As more and more children with autism become adults with autism, what happens to them, where do we turn for help, how do we live our lives. We need help.



Sherry Hebert Lafayette, LA 2013-04-


Name: Sherry Hebert

City: Lafayette, Louisiana

Date of Report: 4.25.13

I'm 62 years old and do not have the money for more insurance. Neither the two insurances that I do have cover long-term care.


Name: Deni Gereighty

City: Metairie, Louisiana

Date of Report: 5.11.13

Three of my grandparents stayed in their own homes with significant family outlay of resources for in home care. There needs to be government action to provide in home care aides instead of nursing home care, bankrupting families and losing all assets to qualify.




Name: Jody Clement

City: Berwick, Maine

Date of Report: 5.08.13

My son will need one on one care and support for daily living, he has seizures and does not talk and needs help with feeding himself and daily living skills. He is 24 hr care and he will always need help with daily living needs and we as a family will need help and support.




Name: Chonita Tindall

City: District Heights, Maryland

Date of Report: 4.25.13

I am currently caring for my 88 year old mother and will soon be adding my 55 year old brother and trying to maintain a full time job. It would be a great assistance to me to be able to have an aide to help with care instead of looking into a facility but the cost is too great. I have no children or other siblings. Who will take care of me?




Name: Jane Woolsey

City: Hudson, Massachusetts

Date of Report: 4.25.13

I am currently taking care of my mother and worry about her care. In addition my husband and I are close to retirement and wish we could afford LT Care.


Name: Warren Bressett

City: W. Brookfield, Massachusetts

Date of Report: 4.25.13

I am a disabled vet and rely on my disability payments to live



Name: Tanagra Weaver

City: Detroit, Michigan

Date of Report: 4.25.13

I know first-hand the stress and financial cost to my sister caring for our aging father and my husband and I in caring for his aging father.


Name: Naomi Ojala

City: Chassell, Michigan

Date of Report: 4.26.13

I'm exhausted and financially drained. Trying to care for father needing care 24/7 and I need to work full-time and part-time to make ends meet. It is a shame that my father who has been worked to the bone all his life to own what he worked for and paid taxes, must let all it all go in order to obtain the same long-term care services an someone who never worked a day in their lives and lived off the system. He has been living with cancer and end stage renal failure due to the cancer. It is sickening that his Medicare supplemental insurance is over $400 per month.




Name: Cindy Backlund

City: Minneapolis, Minnesota

Date of Report: 5.10.13

I'm a single mom of two small boys living with MS. If something should happen to me, I would need the support of services like these!! Long-term care and home health aides, etc. are a must!!


Name: Christopher Kinney

City: Oakdale, Minnesota

Date of Report: 6.20.13

As a quadriplegic who uses PCA's daily all I try to live and work independently, it is vital that I have good support for my ADLs as I live my life above and beyond physical limitations.




Name: Joyce Burt

City: Brandon, Mississippi

Date of Report: 4.25.13

As a full time caregiver for my 98 year old Mother, I see the problems in getting help or placing her in a nursing home. Her only income is her Social Security check. Yet, she draws a few dollars to much to qualify for full Medicaid benefits. I needed for her to be in a nursing home, but every place I contacted, said they had no Medicaid beds, unless she went into the hospital for three days and

then rehab, she could possibly be put in long term. However, if we had the money for private pay, there would be no problem getting a room. If she did not live with me and my husband, I honestly don't know what would have happened to her, as I have no siblings and she is the sole survivor of her family. I can foresee what it would be like should I need care later on, I would have too much income for government help and not enough for private care. I am sure there are thousands in the same boat. Long term insurance is too expensive and it is a guessing game as to how much you would need.




Name: Herbert Barker

City: Ozark, Missouri

Date of Report: 4.26.13

Our long care insurance policy premiums have tripled in the last two years and they promise to continue to increase. We have very little income and will depend upon this insurance in a very few years for nursing care.


Name: John Brandt

City: Branson, Missouri

Date of Report: 5.10.13

As an individual who has dealt with Multiple Sclerosis for over 20 years, I am recognizing the greater disabling effects of the disease. My primary care giver, my wife, passed away in March of 2013, and therefore I will in all likelihood be in need of some long term care within a reasonably short period of time.




Name: Laurel Gebo

City: Great Falls, Montana

Date of Report: 5.15.13

I have been the primary caregiver for aging parents and have many friends who are trying to provide care for a loved one, work full time and balance all the needs of their other family members. Long term supports can go a long way to keep whole families healthy and intact.



Name: Doug Woods

City: Columbus, Nebraska

Date of Report: 4.25.13

My wife and I have witnessed our mothers living into their early 90's and having to spend down there meager assets to qualify for Medicaid.




Name: Maria Garcia

City: Reno, Nevada

Date of Report: 5.08.13

We have a daughter with Down Syndrome, I don't want to think about my daughter not having enough resources to help her grow and achieve her dreams and to help her be productive and as independent as she can possibly be.



New Hampshire

Name: Carol McIntire

City: Freedom, New Hampshire

Date of Report: 4.27.13

My husband has Parkinson's disease and needs more care than I am able to provide. Do not want to lose my home to a nursing home.



New Jersey

Name: Michael Ogg

City: Princeton Junction, New Jersey

Date of Report: 5.02.13

I have severe multiple sclerosis and live at home. I am completely dependent on home aides for all of my activities of daily living. Without support I face poverty and institutionalization.



New Mexico

Name: Lori DeDona

City: Albuquerque, New Mexico

Date of Report: 4.18.13

I am deaf and sign language. I have problem health on chronic my right shoulder, low back and right hip are still pain. I am worry but I don't have who support. I am worrying to payment for financial, bills, food and medicine. If poverty make me anxiety attack. How starve and sick more that risk by my alone.


Name: Tommy Tomlin

City: Las Cruces, New Mexico

Date of Report: 4.25.13

I know people who need this assistance and are suffering because they can't afford it. I am 68 years old and hope I can afford it if that time comes. I want to make sure resources are available.


New York

Name: Paul Bleiweiss

City: Liverpool, New York

Date of Report: 4.11.13

I work in healthcare and see folks with disabilities every day as they fight & struggle to maintain their dignity. Furthermore, both myself & my family have disabilities ourselves. And well both my wife and I have mothers in the mid 80's now who soon enough will need some form of a higher level of care than we could provide for them personally as much as we wish we could.



North Carolina

Name: Jane Wrenn

City: Siler City, North Carolina

Date of Report: 4.25.13

After caring for elderly parents, I realized first hand the pitiful treatment our seniors receive as they are at the end of life. Our father was career military and our mother worked many years to support the family. Unacceptable treatment of seniors in our country.


Name: Pat Myslicki

City: Winston-Salem, North Carolina

Date of Report: 4.30.13

My daughter Katherine is 45 years old; she is a person with autism and intellectual disabilities,. Kath will require long term care for 24/7 supports and supervision. I will not live forever; I need to be confident that her care will be managed with tax funding. Kath is a citizen who is a real person. Her awesome smile would amaze you!



North Dakota

Name: Jeanna Dolajak

City: Dickinson, North Dakota

Date of Report: 6.17.13

I have been living w/ MS for almost 16 years and I do not want my family suffering even more then they already are because of the cost for everything!!!!




Name: Fred Oswald

City: Cleveland, Ohio

Date of Report: 4.27.13

We've lived frugally and saved, so we can "afford" our own care. But if disaster (such as a stroke) strikes, even we may need help. That help should be available.


Name: Joyce Blair

City: Riverside, Ohio

Date of Report: 5.10.13

My son, 39 years old, is disabled and in a power chair because of MS. Long term care will be crucial for his life.




Name: Tommie White

City: Newcastle, Oklahoma

Date of Report: 4.27.13

This is important because long term care has taken all the money my parents had worked so hard to save.


Name: Roberta Rains

City: Oklahoma City, Oklahoma

Date of Report: 5.08.13

I have a grandson with cerebral palsy in an electric wheelchair.



Name: Helen Brown

City: Medford, Oregon

Date of Report: 4.27.13

I saw what long-term care did to my mother's bank account after she suffered a stroke in 1992. There was no way she could stay in an assisted living home so we had to place her in an adult foster-care home. She only lived 14 months after her stroke. As heartbreaking as it was to lose her it was a blessing because we were fast running out of options as her bank account dwindled (or

should I say rushed) into oblivion. That was in 1993 and I shudder to think what it would be like today. I am now totally disabled and the thought of what long-term care could do to my family makes me cringe!



Name: Marie Beattie

City: Lincoln University, Pennsylvania

Date of Report: 4.11.13

Long term rehabilitation services are as critical as life sustaining medications for Corey. She is recovering from a severe traumatic brain injury. Without coverage for long-term services and support, she will never have the opportunity to regain function to live independently.


Name: Kathryn Rhodomoyer

City: Allentown, Pennsylvania

Date of Report: 4.30.13

My son has severe autism; cannot speak, sign, or write. He has very few selfhelp skills and severe behaviors. He will never be able to support himself in any way. He truly represents the most vulnerable of society -- those in which there really needs to be something in place. We will do all we can for as long as we can, but we do need help desperately.



Rhode Island

Name: Elizabeth Patnaude

City: Rumford, Rhode Island

Date of Report: 4.26.13

Both Husband and I are disabled. I have a progressive neurological disorder and will need help.



South Carolina

Name: Teresa Heitz

City: Greer, South Carolina

Date of Report: 5.21.13

This is important to me because I have relapsing-remitting Multiple Sclerosis and do not want my family burdened by present or future health care costs.


South Dakota

Name: Angela Swenson

City: Sioux Falls, South Dakota

Date of Report: 5.10.13

This is important to me since I was diagnosed with MS 4 years ago. Right now I am able to maintain my work duties, but MS is such an uncertain disease! Nobody knows when the next disabling episode will strike. It would be such a relief to know that this were available if I needed it, but hopefully I won't need it anytime soon. I know there are others who have this same, horrible disease who would truly benefit from it.




Name: Dianna Bridwell

City: Kingsport, Tennessee

Date of Report: 4.26.13

My Mom is in assisted living and the charges are very expensive. She has last stage of Alzheimer’s and needs care 24-7. Her savings has all been used as she has been dealing with this illness 6 1/2 years. Help is needed for these patients.




Name: Linda Graf-Wilcox

City: San Antonio, Texas

Date of Report: 4.25.13

I've taken care of not one but two loved ones who have since passed and am currently taking care of my husband who suffers from FTD. I know first-hand the cost not only financially but emotionally and physically as well. I wonder what will happen to me when my turn comes.


Name: Antoinette James

City: New Braunfels, Texas

Date of Report: 4.25.13

I take care of my 71 yr old spouse who suffered an anoxic brain injury after hip surgery and my 47 yr old blind sister with Down Syndrome. Currently neither one should be in a nursing home. The day is not far off when that will become a necessity and when that happens, I will literally become a homeless, street person becaue of the the high cost of long-term care. This country should be a leader in providing care for the senior citizens and persons with special needs, instead, this country's health care system is shamefully lacking. Please take this matter seriously and make a difference for your constituents and citizens of the U.S. of A.


Name: Cyrus Stalnaker

City: Kingwood, Texas

Date of Report:4.27.13

I am 86 and taking care of my wife of 68 years who is has dementia, and increasing. I am 87 and in past 4 years I had brain tumor and Lung Cancer. I am her care giver and wouldn't have it any other way but I could use help. Us care givers get run down and tired.




Name: Maria Emilia Tenreiro-Moon

City: Carrollton, Utah

Date of Report: 4.24.13

I'm in the same boat as Jimmy from pleasant View, UT....I been caring for my mother for almost 4 years...I've only had the luxury of a very few short breaks! Why? ... we cannot afford the $155.00 per hour a nurse charges in my area. Mama does not have insurance...




Name: Susan Noel

City: West Barnet, Vermont

Date of Report: 5.11.13

My mother died of Alzheimer's at age 93. My Dad kept her at home for 10 years as she lost everything that made her who she was, because they could not afford any help, much less a care facility. This has to change. The lack of care is destroying families right now. And what about people who live alone? What's going to happen to them? Just wait, it will touch you, or your family, soon. We need help urgently.


Name: Kim Tardie

City: Barre, Vermont

Date of Report: 6.04.13

As Grandparents that are adopting our special needs Grandson we can clearly see that expenses for getting my Grandson the best possible chances at living the most healthy life definitely cost money. I don't believe that it is a justice to have services that can help our children improve unattainable due to financial restrictions. This is especially true for Grandparents that are starting the task of raising the next generation on a limited income.




Name: Judy Stevens

City: Alexandria, Virginia

Date of Report: 6.22.13

I have seen loved ones struggle to plan for, and be able to have, a life in the community when challenged by age and injury. A nation like ours should be able to do better, and offer a wider array of options for people--options that provide dignity.


Name: Kathleen Waller

City: Stafford, Virginia

Date of Report: 4.26.13

I am 67 and my husband is about to turn 62. He is about 4 years into fronto temporal dementia. He has over a year to qualify for Medicare under SSD. The loss of his income has had a severe impact on us financially. The strain of caring for him is taking its toll on me. I have no idea how I will see him through this and what will be left of me or our finances by the time it is over. This disease is so cruel. It has isolated both of us. He can't stand me out of his sight and can't stand to see me to talk to anyone else.


Name: Ellen Owen

City: Springfield, Virginia

Date of Report: 4.26.13

I am currently caring for both parents with dementia at home, I had to leave a great job to come home and do so because the care they were receiving at home was outrageously expense and sub-par. There needs to be alternatives to nursing homes where our loved ones are sent to die. Care that offers our parents the love and dignity they deserve - especially veterans who have served our country!!!! This is shameful!!!!!!!




Name: Lisabeth Belden

City: Mercer Island, Washington

Date of Report: 4.25.13

My husband's father was a WWII vet (Marine captain in the Pacific theatre). He developed dementia at age 90 and lived until 94. Two of his children had to move to another state, get new jobs, and one even live away from her own spouse to help take care of him.


Name: John Boettner

City: Seattle, Washington

Date of Report: 6.08.13

I am 61, a bachelor, and no other relatives I can count on to be a caregiver. I've applied for Long-Term Care and was denied because of a pre-existing condition.


West Virginia

Name: Stephanie Hill-Minnich

City: Harts, West Virginia

Date of Report: 5.10.13

This is extremely important to me because I was diagnosed with Multiple Sclerosis in 2011. And, my husband has Charcot-Marie Tooth Disorder (Muscular Dystrophy) since birth. So, we are two that this could affect someday in the future, because our future is unknown. We need all of the help we can get because we are on an extremely low income and need all of the  help we can get.




Name: Kimberly Muniz

City: Pardeeville, Wisconsin

Date of Report: 5.09.13

My 11 year old son has autism and it is VERY scary to think about the how the world will be for him when he turns 18 and beyond....there is a HUGE HUGE influx of children and adolescents so Congress needs to think long and hard on how to deal with this problem.



Name: Joyce Ortiz

City: Gillette, Wyoming

Date of Report: 4.25.13

I was a caregiver to both my parents. I would have loved some help but could not afford it for them. Now I am older and who and how will I be taken care of? Please help us!