Living
By Chance, Not Choice
Kansans Affected By Budget Cuts
Within these pages are stories of real people whose lives are being torn apart by Kansas budget cuts. These stories represent individuals with disabilities, of all ages, from many parts of the state, each with their own unique needs. In August and November of 2002, Governor Graves ordered allotments totaling over $32 million in State General Funds for Kansas Social and Rehabilitative Services (SRS). This is a loss of over $63 million to the SRS budget when federal matching funds are counted. Cuts targeting Home and Community Based Services (HCBS) and Medicaid Services are causing people with disabilities to lose their freedom, independence, dignity, and right to be productive community members. The cuts will force many into nursing homes, and force others to live in poor environments that put their health, safety, and well being in jeopardy. The cuts are affecting LIVES.
The Statewide Independent Living Council of Kansas (SILCK) is dedicated to ensuring independence and the opportunity to live a safe, healthy, and productive life, in the community setting of choice, for all persons with disabilities. The SILCK, with the help of Jason Gallagher, and the cooperation of the Independent Living Centers in Kansas and the Research and Training Center on Independent Living (RTCIL) at the University of Kansas, have created this booklet of stories to show the Kansas Legislature, and the Kansas public, the faces that correspond with the dollars being cut. By creating this booklet, and illustrating the adverse affects of budget cuts, the SILCK urges the 2003 legislature to do the right thing, and ensure that adequate funds are restored to critical SRS services that make it possible for Kansas citizens with disabilities to live independently in their own homes.
* For more information contact Shannon Jones, 785/234-6990
The SILCK gives many thanks to all individuals and organizations that helped gather stories and pictures to help make this book a reality.
Special Thanks to the Following:
Jason Gallagher
for gathering stories, organizing, editing, and facilitating the creation of this book.
Tom Olin
for providing pictures from Southeast Kansas.
These Independent Living Centers for providing consumer stories:
Southeast Kansas Independent Living (SKIL)
Resource Center For Independent Living (RCIL)
Coalition For Independence (CFI)
Independence Inc.
LINK (Living Independently in Northwest Kansas)
Independent Living/OCCK
AND
The Research and Training Center on Independent Living (RTC/IL) at the University of Kansas
for printing and publishing the finished product.
This document was printed by the RTC/IL, but the contents do not necessarily represent the policy of the RTC/IL or the University of Kansas.
The Statewide Independent Living Council of Kansas (SILCK) is a 501 (C)(3) non-profit organization that receives Federal Funds pursuant to the Rehabilitation Act of 1973 as amended.
Robert Jarman
Age: 39
From: Columbus, Cherokee County
Impact of Budget Cuts: Loss of HCBS Services/Raised Eligibility
Senator: Jim Barone (13th) or Dwayne Umbarger (14th)
Representative: Doug Gatewood (1st)
I am a thirty-nine year old man living with my wife and two children ages 13 and 9. My wife is a part-time teacher's aide at the local high school. I was working up until October 15th as the "Reg. Director of Oxford Health Care" out of Joplin, Missouri. I have also worked as a Case Manager for Vencore Hospital - Long Term Ventilator Hospital. When Vencore went bankrupt I started working at Vancare as a Nursing Home Consultant.
In the last year, I have stayed in the hospital ten times and seven of those have been in ICU. I was told I had asthma, but was later diagnosed with Pan Brocule Malasia. I have had to travel to Denver, Colorado to the Jewish Hospital to see doctors. In December I was given a ticket for my plane fare, so I could go. Because of my diagnosis, I am on oxygen 24 hours a day. I have to use a cane to walk any distance, and I cannot do a lot of things I used to. I can no longer play with my children, I cannot work, and my wife must do things around the home I use to do, such as mowing the lawn. I can no longer drive and I have blackouts.
My SSDI does not start until June 2003 and without HCBS my wife will have to quit her job to stay at home with me. Because I cannot work, I was let go from my job because of my disability. We have lost our truck due to repossession and had to borrow money for health insurance and for our home, so it did not get repossessed. I filed a complaint with the Equal Employment Opportunity Commission approximately the week of October 20, 2002, but I have not heard back from them.
With the budget cuts I am no longer qualified for HCBS. Without these essential services my family will either lose its only source of income or I will be forced into a nursing home. Forcing me into a nursing home is against the Olmstead Act.
Give me the freedom to choose where and how I want to live with the money that is available.
Veronica Patterson
Age: 20
From: Oswego, Labette County
Impact of Budget Cuts: HCBS/PD Waiver Waiting List
LOC Score: 44
Senator: Dwayne Umbarger (14th)
Representative: Jack Jeff (7th)
I reside at home with my mother Anita and my sister Samantha. I have been on the HCBS PD Waiver waiting list for 8 months. Due to the Kansas Budget Cuts, I have been advised that the freeze of the HCBS can be up to another 8 months, but, if I wish, I can get services in a nursing home now. That is against the Olmstead Act and is forcing me to be institutionalized instead of the funding being available to me for my freedom of choice.
I was born with Spina Bifida and used leg braces, a walker and a wheelchair until age 11, at which time I had to start using a wheelchair permanently. I moved to Kansas in May 2002 to finish my undergraduate studies and eventually attend Pittsburgh State University for my Masters Degree. I was advised when I first applied for services that there would be services available in approximately 6 weeks. It has been 8 months and I am still on a waiting list.
My home is not accessible and without the assistance of my Mom and sister Samantha I would be totally home bound. My home has no ramp at the entrance and an interior ramp is needed for me to get into my bathroom, which is not accessible either. Due to the fact that my bathroom is not accessible I must do clean intermittent catherization in my bed.
Because I need assistance and do not have services, my sister does not work, so she can assist me in my daily living activities. My mother works but keeps a thirty-two hour workweek and is in college full time. Lack of services has caused financial difficulties. Because Samantha is not working outside the home, and is caring for me, she cannot contribute to the family finances.
Pursuing my education should be within my rights, but if I'm in a nursing home at age 20 what kind of education would I have? NONE. My quest with this complaint is to have Home and Community Based Services, not a nursing home, and to have "Freedom of Choice."
Gerald E. Scott
From: Fredonia, Wilson County
Impact of Budget Cuts: Lowered Protected Income
LOC Score: 58
Senator: Derek Schmidt (15th)
Representative: Mary Compton (13th)
The budget cuts effective February 2003 will force me to enter a nursing home. This will cost the state an additional $16,000 a year for my care. I will be required to live on $645 per month, a reduction of $70.
I now receive in-home care for which I pay $171 per month. The state pays the remaining $450 per month or $5400 per year for 20 hours per week of attendant care. I pay all my living expenses. My therapy expenses (which Medicare does not cover) take the remainder of my check. The therapy has enabled me to improve from being a total-care invalid to walking with a cane. I do most of my personal hygiene with help. I still can't manage medication, transportation, therapy, paperwork, and housekeeping. I cannot live alone without help.
These services are provided at a cost of $650 per month for HCBS services and not $2000 per month for a nursing home. The State's expense will increase if the budget cuts continue. I will no longer be able to pay for therapy or care. A nursing home will be required if I regress. The disabled poor can't correct the deficit.
Robert Auten
Age: 59
From: Chanute, Neosho County
Impact of Budget Cuts: On Waiting List for Services
LOC Score: 37
Senator: Dwayne Umbarger (14th)
Representative: Jerry Williams (8th)
My name is Robert Auten. I am a 59 year old, single man. On May 28, 2002, while admitted to Neosho Memorial Regional Medical Center in Chanute, KS for heart problems, a blood disorder, and seizures, I applied for disability. I have hepatitis B with kidney failure and had my right arm amputated in 1964. I am in the process of beginning dialysis. I take 14 different medications. The medications I take prohibit me from driving. I have a Co-Pay of $3.00 for each prescription I take.
Since May I have had to move 5 times and I am trying to get an apartment through the Chanute Housing Authority.
I receive $522.00 a month through SSI. I have been on the PD waiting list for 7 months. I need help with transportation, cooking, cleaning, shopping and taking my medications since I have no family available for informal support. I have been working with SKIL (Southeast Kansas Independent Living Center) trying to get HCBS so that I don't have to live in a nursing home.
Mary Moore
From: Columbus, Cherokee County
Impact of Budget Cuts: Waiting List Eligibility Raised
LOC Score: 28
Senator: Dwayne Umbarger (14th)
Representative: Doug Gatewood (1st)
I am a Diabetic and I fall several times per day. I have had open-heart surgery and continue to have great difficulty with heart problems. I get fatigued easily. I have lung problems as well as severe arthritis and I have to take several medications. I need help with bathing, cleaning, shopping, and transportation.
My daughter does all my shopping, bathes me, and also cleans my house. She has had to stop her life to take care of me. She would have opportunities to work and spend more time with her family if she did not have to take care of me everyday.
I have been hospitalized three times for my heart conditions since May of 2002. It is unsafe for me to walk any distance without assistance. Many times a day, in my own home, I find myself laying on the floor until someone comes to check on me. If my daughter can not get in touch with me on the phone, she panics and drives over to my house to see if I have fallen and am lying on the floor somewhere or if I am simply still alive.
I am at the point that if I do not get some help in my home, I will have to go into a nursing home. Raising the score was unfair, especially after I met the criteria and was assessed before the score was raised for in-home services. If you don't think I need the services you can call my doctors.
My daughter had to quit her job at Dollar General Stores so that she would be able to take care of me. PLEASE do what is right and provide services so that my daughter can live her life and so that I am not forced to go into a nursing home.
Judy Kontur-Sperling
Age: 55
From: Augusta, Butler County
Impact of Budget Cuts: Lowered Protected Income Level
Senator: David Corbin (16th)
Representative: Everett Johnson (77th)
Judy's client obligation will change from $154 per month to $236 per month starting February 1st because of SRS budget cuts. That is $82 less per month for paying rent, utilities, medications, and other necessities like food. Judy wasn't making it before and had to rely on her children to help her pay the bills. With the 26 pills plus pain medication, diabetic supplies, and nebulizer that Judy must have just to stay alive, she has to then make a choice whether to eat, pay rent, or pay other bills - "...My children are giving up parts of their dreams so they can help me live my meager existence."
Judy worked hard all her life up until she acquired her disability 6 years ago, and feels strongly she has earned the right to get help from the government. "...Do they [legislators] not think I would love to go back to work if I was able?" asks Judy. All she wants is to be able to live a simple, comfortable life. Her husband, who died two years ago, was a United States Marine, and also worked hard all his life. "He died fighting for his life just as he fought for our great nation. I am still fighting for my life," says Judy.
Richard January
Age: 18
From: Columbus, Cherokee County
Impact of Budget Cuts: HCBS/PD Waiver Waiting List
Senator: Jim Barone (13th) or Dwayne Umbarger (14th)
Representative: Doug Gatewood (1st)
I am eighteen years young. I was born with a major birth defect (Spinal Bifida), which has left me with neurological deficits and major physical deficits. My parents were told at my birth that I would not be able walk, crawl, or even sit up on my own. Since birth I have had 26 major operations and two "clinical" deaths.
I would like very much to live as an independent adult. I currently live with my parents. I have no other options because I am on the waiting list for HCBS. My mother has attempted to work, which only resulted in her resignation so she could remain at home to provide my care. This causes financial hardship for my parents. As a child I understand that this was their financial responsibility, but now that I am an adult, it should be mine.
While I attended school I felt pretty much like the other kids because I had the support that I needed including a full-time one-on-one para-professional. Again, I felt pretty much like a normal student with the assistance available through my I.E.P., but now that is gone. These services were there before I was eighteen. But now that I am an adult and there is a waiting list for HCBS, I have no services.
Now I need services in the home to begin my life, so that, I too, can become a productive adult. I understand that my score on the HCBS assessment qualified me for services, but all that has happened is that I was placed on an unfair and unjust waiting list, which I have been told, is against the federal law. I have been waiting since July 2002.
I have two choices. One is to live at home so that my parents can provide my care, again forcing my mother to stay at home to provide my needed care, although she cannot really provide it all. The other choice, which I do not like, is to live in a nursing home. I feel that it is uncalled for when an eighteen year old is forced to live in a nursing home.
I am young and vibrant and want to begin my life as an adult and feel like I am beginning life; I don't feel like it should be the end before my adult life starts. Through supports and services I would have the opportunity to go to school and learn a trade, go out in the community, interact with my peers, but more importantly, I would have the chance to live an independent life.
My peers and friends are not disabled, and are going on with their lives, including my twin brother. They have all gone on to college while my life is at a stand still, leaving me behind my twin brother and my peers. It is very depressing to see this happen.
IF I WOULD NOT HAVE BEEN PLACED ON A WAITING LIST, I WOULD HAVE HAD THE OPPORTUNITY TO HAVE STARTED WORKING TOWARDS MY GOALS!
I HAVE BEEN DISCRIMINATED AGAINST BECAUSE OTHER PEOPLE WITH DISABILITIES ARE RECEIVING HCBS AND I AM ON A WAITING LIST FOR THE SAME SERVICES.
I AM PREPARED TO DO MY PART, NOW I ASK THAT YOU DO YOURS. OBEY THE FEDERAL LAWS AND PROVIDE ME WITH SERVICES IMMEDIATELY SO THAT I CAN GET ON WITH MY LIFE.
Jean Alvarez
Age: 62
From: Arma, Crawford County
Impact of Budget Cuts: Lowered Protected Income
LOC Score: 52
Senator: Jim Barone (13th)
Representative: Robert Grant (2nd)
My name is Jean Alvarez and I am a 62-year-old female with numerous health problems. I receive Home and Community Based Services, which allow me to remain independent in my home rather than being placed in a nursing home. The budget cuts and changes to the Medicaid program have made this option very difficult for me. I now pay a monthly obligation of $142.00. This is due to a change in my accountable income. This change has forced me to decide what is more important; in-home assistance or food. It is very difficult to make an entire new budget each month when you are on a fixed income. These changes are not affecting persons who have the means to care for themselves, but instead have placed the burden on the elderly, the disabled, and the poor. I would like for my voice to be heard regarding these changes, and I ask that theses cuts be looked at very closely before a decision is made. Persons such as myself cannot take another increase in what we have to pay to remain independent. I ask that you not force people with disabilities into nursing homes.
Carol Rhea
From: Baxter Springs, Cherokee County
Impact of Budget Cuts: HCBS Waiver Freezes/Waiting List
LOC Score: 36
Senator: Dwayne Umbarger (14th)
Representative: Doug Gatewood (1st)
I am on oxygen 24 hours a day. I have Congestive Heart Failure, Diabetes, COPT, lung and breathing problems and high blood pressure. I cannot do my own shopping and I need transportation. I cannot clean my house. I have many medications and I cannot do the basic living tasks that I need. I need assistance with all aspects of daily living from cleaning to cooking. I cannot stand at the stove long enough to cook 95% of the time. My children have to take time from their own families, that need them in their own homes, to provide care to keep me from having to go to a nursing home. I was assessed for HCBS on August 13, 2002. I met the criteria for HCBS, but was put on a waiting list. Since I was put on the waiting list my conditions have turned worse. I am now getting close to being forced into a nursing home because my children are taking more time away from their own families. I feel that it is discriminating that the State will provide care for me to live in a nursing home." The nursing home is very expensive and I would be left in a wheelchair in the hallway for hours at a time just to rot away, rather than provide services in my own home that would allow me choices and be more cost effective. I used to be a productive citizen paying employment taxes and sales taxes like everyone else. I am still a taxpayer and a citizen. I was put on a waiting list for HCBS when I should have been able to receive these services when I met the criteria, the same criteria that the State will use to put me in and pay for a nursing home. This is downright discrimination against me. Do the right thing and let me live in my own home with the minimal amount of services to meet my needs.
Rhonda Rogers
From: Columbus, Cherokee County
Impact of Budget Cuts: Kicked off Waiting List/Raised Eligibility Requirements
Senator: Dwayne Umbarger (14th)
Representative: Doug Gatewood (1st)
I have Hepatitis C, which was caused from a blood transfusion when my son was born fifteen years ago. This has also caused me to have Cirrhosis of the liver for which I receive chemotherapy three times a week. I also have progressive Rheumatory Arthritis and Hypertension.
I need help with all aspects of my daily living and I am totally dependent on someone else for my laundry, house cleaning, and transportation to chemotherapy. If it were not for my fifteen-year-old son, I would be in a nursing home. On the days that I am very ill my son has to stay home from school to take care of me. I am very concerned for his education and the principal is very understanding.
What the State of Kansas has done to me is unfair, as well as what they have done to my son and his education. I feel very discriminated against. I was assessed for HCBS services in August of 2002. I met the criteria then, and I qualified for services in my home only to be told that I was going to be placed on a waiting list. I found out that the criteria score was moved to 30 and that I only had a 27 and no longer qualify for services.
I feel that it is very unfair and unjust to have been placed on a waiting list to begin with, and with the same score the state will pay an enormous amount for me to go to a nursing home. I received my Notice of Action that I no longer qualify for HCBS and I have been removed from the waiting list because someone at the State of Kansas decided to raise the score criteria to 30. I qualified for these services and should be receiving them now.
I cannot believe that those we vote into office would allow the citizens in their own country to be treated this way. You can be sure that there are many citizens with disabilities when it comes to voting, and we will be looking long and hard at whom we vote for.
Ronald Murphy
Age: 54
From: Augusta, Butler County
Impact of Budget Cuts: Lowered Protected Income
Senator: David Corbin (16th)
Representative: Everett Johnson (77th)
Ronald receives Social Security payments and a small VA pension totaling a miserable $800 a month. That amount isn't much to live on by itself, but Ronald also has to pay a client obligation of $142. Even worse, his client obligation is $68 more than it was previous to February 1st. Ronald has to pay his obligation or else he won't be able to keep his medical card, which he needs for kidney dialysis and other medical bills. He also receives PCA hours and gets help with his medications, and other household daily activities. With the extra obligation Ronald now must spend less on groceries and doesn't have any money for hobbies. He used to love fishing, hunting, and leatherwork, but there is absolutely no funds for them now, as they are too expensive. Worrying about heating and electric bills, how he will pay for them, Ronald exclaims, "How the hell am I supposed to live?" Ronald invites any legislator to live on his income level to see what it is like. Ronald does what he can to stay independent in his own home, as he says, "I live in a house, but I can't afford to do anything."
Janette McNeese
From: El Dorado, Butler County
Impact of Budget Cuts: Lowered Protected Income Level
Senator: David Corbin (16th)
Representative: William Mason (75th)
Janette's client obligation is now $139, over $70 more than it was previously. The extra expense is making it nearly impossible for her to pay her bills, and is adding stress to her life and her family's life. Janette has had multiple heart attacks and multiple strokes, leaving her unable to do any strenuous activity, and severely cutting down her stamina. Janette has a PCA who helps her do all daily living activities she cannot handle herself.
Keeping Medicaid is vital for Janette because it gets her the PCA service, and it also pays for most of her medicines. Like she says, "I can't afford to live without my medical card." The problem is, with the protected income level raise, she can barely afford to live WITH her medical card. Janette just wants to be able to stay out of a nursing home and do the few things she can as independently as possible. The cuts will make it hard on her family, because they are starting to pay for expenses Janette cannot afford. Her children do not want to see her go into a nursing home, and would want to help her before she does, but Janette does not want to see her children torn from their families just to help her. "They are making it hard to be independent and are putting stress on my family," says Janette about the budget cuts.
Amy Ritter
Age: 38
From: El Dorado, Butler County
Impact of Budget Cuts: Independent Living Center Layoffs
Senator: David Corbin (16th)
Representative: William Mason (75th)
Amy will be losing her job at RCIL in El Dorado on February 1st, because RCIL cannot afford to pay her. Amy supported herself and was able to stay off the system because of her job. RCIL made accommodations for Amy to be able to work with her disability. It will be very hard for Amy to find another employer who will make the same accommodations.
Changes in reimbursement rates, loss of grants, and other funding cuts to Independent Living Centers are making it hard for centers to provide consumers with services, at a time when people need help the most. It is this loss of funds that forced RCIL to let Amy go.
Amy's biggest fear is losing health insurance that she needs to help pay for her medications. Amy has worked for 11 years and her employment has allowed her to stay independent. Without her job she will be forced to rely heavily on state programs. There is also a great possibility she, at age 38, will have to move in with her parents. "That's not right, I should be able to remain on my own like any adult," says Amy.
Gloria Dolbow
Age: 52
From: Andover, Butler County
Impact of Budget Cuts: Waiting List, Vision Services, Transportation
LOC Score: 36
Senator: David Corbin (16th)
Representative: Todd Novascone (99th)
Gloria sighs, "It is a major fear to think I will have to go in a nursing home if I can't get this assistance, which is minimal." Gloria needs assistance with getting in and out of the tub, transportation to doctor's appointments and the pharmacy, getting medications, and other daily activities. Gloria is currently on the waiting list with a score of 36. She was supposed to be able to get services starting in January or February, but because of the budget cuts, that date has been pushed back.
Currently Gloria's daughter, who has 3 girls of her own, takes time out of her day to make sure her mom is okay. This is only possible because her daughter is currently between jobs. Because her daughter has her own family, and is looking for a job, caring for Gloria is an added stress in her life.
All of these problems are compounded by other service cuts such as the elimination of transportation to doctors and funding for vision services. Gloria was especially hurt by the latter cut, because she has major eyesight problems. Gloria used to be active in the community, where she attended a church singles group that had activities such as watching soccer games and going to the movies. She loved to be able to do these activities, but without help, she is just "stuck in her home." Soon she won't even be able to be stuck in her home, and will have to go to a nursing home if she does not start receiving HCBS services.
Tina Fitzpatrick
Age: 34
From: Wichita, Sedgewick County
Impact of Budget Cuts: Lowered Protected Income Level
Senator: Jean Schodorf (25th)
Representative: Nile Dillman (92nd)
Tina, who has Fibromyalgia and Arthritis, will now have to pay $50 more per month to continue to receive HCBS supports and care for herself and her 10-year-old son who also has a disability. Tina needs a PCA to help her with daily living activities like bathing, preparing food, and other arduous tasks that are difficult because of her disability. Paying more to keep her needed attendant services, means Tina has less money to pay the bills and buy food; she was already struggling. "I'm not really making it and now I'll have to pay $50 more? " questions Tina. Her expenses include rent, utilities, food, and special skin products and vitamins (which Medicaid does not cover). She was struggling to feed herself and her son on $716 a month, and now she is expected to live on only $645. Tina just wants to be able to live independently and give her son the attention he needs. Tina sighs, "I spend most of my time fighting for what little I can get - and I'm tired."
Jean Zimmerman
Age: 56
From: Minneapolis, Ottawa County
Impact of Budget Cuts: HCBS PD Waiting List Freeze/Moved Off List
Senator: Pete Brunghardt (24th)
Representative: Joann Freeborn (107th)
My name is Jean Zimmerman. Ten years ago I was diagnosed with degenerative disk disease and osteoarthritis and then in 2002 I was diagnosed with osteoporosis and Parkinson's disease.
My arthritis affects me mainly in my hips and legs. It hurts my knees to stand for long periods of time. My Parkinson's disease causes me to spill things and I have a hard time eating and swallowing. It has also made it hard for me to write letters and be a historian of the VFW auxiliary. I can't bend over to wash my legs and feet or wash my hair when bathing. I can't scrub my tub, mop my floors, lift groceries, do my wash or walk my dog. I want to do all that I can do in order to remain as independent as I can.
To help me try and remain independent, I was placed on the physical disability waiver waiting list in October of 2002. Due to the SRS budget cuts and the freeze, my name was taken off the list. After my doctor recommended I receive physical therapy, I was re-evaluated and placed back on the waiting list -- but now at the bottom.
While I wait for the freeze to be lifted and my name to come up, I am forced to pay out of pocket for others to assist me. I have been fortunate to find the help I need, but I'm having a hard time coming up with the money to pay for these services, because of my fixed income.
I hope you will reconsider the freeze on the physical disability waiver. This is very important to me and others like me. Thank you for taking time to read my story.
G.S.
Age: 55
From: Salina, Saline County
Impact of Budget Cuts: Lowered Protected Income
Senator: Pete Brunghardt (24th)
Representative: Joshua Svaty (108th)
G.S. is a 55-year-old woman with COPD (Chronic Obstructive Pulmonary Disease) who weighs 85 pounds. Issues surrounding COPD are - heart problems, circulation problems, osteoporosis, and very limited breathing needing O2 continuously. G.S. has a very limited capacity to breath and must use a wheelchair or sit all day to conserve her energy. G.S. sleeps in her recliner and she does not bathe or change clothes on a daily basis in order to conserve energy. She needs someone to assist her with eating, all her personal hygiene needs, changing her clothes, daily housekeeping (for breathing issues), emptying her bedside commode, going to the grocery store, checking the mail and sending bills, and doing her laundry.
G.S. receives services on the HCBS Physical Disability waiver. She lives independently on a very limited budget. Effective February 1, 2003, she will now have to pay for some of her services because it was determined people could live on only $645.00 per month. Out of her disability check she makes her house payment, pays her utilities, buys her food and other necessities. "The State has me so scared, I am afraid to open my mail. I am afraid they will yank something else out from under me."
Upon first learning she would have to pay for her services her statement was, "They may as well put me in a pine box now, because that is where I am heading."
Shirley
Age: 62
From: Salina, Saline County
Impact of Budget Cuts: Loss of HCBS/PD Waiver Services
Senator: Pete Brunghardt (24th)
Representative: Carol Beggs (71st)
Shirley has renal failure, impaired vision and sustained a stroke that affected her left side. As a result of these medical conditions she also has high blood pressure, GI tract problems, arthritis, and heart problems. She goes to dialysis three days a week.
Shirley is a very proud, independent woman who always works hard to stay independent. She required very little from the HCBS PD waiver to keep her healthy and safe in her home. She was only receiving three hours per week from a home health agency to assist her with laundry and housekeeping. Shirley tries to use her energy and time wisely so as not to burden the State.
Her fight to remain as independent as possible has resulted in a long-term care threshold score that is too low to receive services after January 31st, 2003. Shirley has fought hard to stay off programs. She raised two children alone, and worked full time, before she became disabled. Now, because of her life-threatening disabilities, her health and safety are in jeopardy. Due to losing her HCBS services she will now have a spend-down of over $600.00 every six months that must be incurred before she can receive a medical card. She lives on only $593.00 per month from Social Security Disability that pays her rent, utilities, food and transportation to her dialysis and other medical appointments. This is a debt that Shirley is certain she cannot handle; therefore she is considering doing without her dialysis, even though she is aware of the deadly consequences.
Vernon Kestor
Age: 47
From: Phillipsburg, Phillips County
Impact of Budget Cuts: Lowered Protected Income
LOC Score: 47
Senator: Janis Lee (36th)
Representative: John Faber (120th)
Vernon's client obligation went from $235 per month to $300; a $65 increase. Vernon has Multiple Sclerosis and uses a wheelchair full time. With his medical card he is able to get his many medications. He also receives HCBS services to help him do household chores, cooking, and heavy work that he can't do from his wheelchair. Vernon is very independent and does as much as he can by himself, but with less money to live on, his independence is in jeopardy. "Once you've paid rent, lights, telephone, and groceries - it doesn't leave much to live on, " says Vernon. It is little things like being able to afford decent clothes that Vernon can't do anymore. He finds his brothers and sisters paying for clothes and other personal items he needs, but it isn't fair. Vernon just needs to be financially stable so he can be independent and feel a sense of belonging in his home and community.
Marie Gaines
Age: 53
From: Phillipsburg, Phillip County
Impact of Budget Cuts: Moved off HCBS/PD Waiver Waiting List
LOC Score: 26
Senator: Janis Lee (36th)
Representative: John Faber (120th)
Marie says, "We just barely make it now, and then they cut it; we will be on the street or starving." Marie has Diabetes, Degenerative joints, Fibromyalgia, and uses a scooter. Marie was on the waiting list, with a score of 26, but was taken off the list because of the budget cuts. Marie wanted minimal supports for the daily household chores that are hard for her to do because of stamina problems with her disability. Before she acquired her disability 10 years ago, Marie was a cook at a university. She enjoyed her job, and enjoyed cooking. Now she has to eat quick foods, because she cannot stand long enough to cook meals.
Also, before Marie got her scooter, she was totally dependent. Now she just wants to stay independent, but desperately needs help around the house to stay in her home. Currently she has a sister Jennifer who helps when she can, but that takes away from her sister's life. Marie does as much as she can for herself, and is just asking for a little bit of support to help her manage her life.
Jo Dee Dunn
From: Great Bend, Barton County
Impact of Budget Cuts: Lowered Protected Income Level
LOC Score: 38
Senator: Ruth Teichman (33rd)
Representative: John Edmonds (112th)
My name is Jo Dee Dunn and I have a disability that keeps me from the work force. Until this year, I have relied on Medicaid for my medical expenses such as Home and Community Based Services (HCBS), which provides me with in-home services.
I have now been informed that I will need to pay the difference between what HCBS can pay and the top end of my benefits. This amount is only $16.60, but that amount can go a long way when buying food. I also have the right to incur a monthly spend-down with out-of-pocket expenses so in doing that I hope I'll be able to defer these expenses.
My concern is that I can't always incur the spend-down and that being the case, the $16.60 will come out of my pocket and therefore out of my grocery budget. I only make $661.00 a month and with the cost of living in today's world, I barely make ends meet. I feel that this new policy will make it harder for myself and other disabled people to live.
I would ask that you reconsider this policy, and arrive at a different conclusion. We, the disabled, have enough to cope with and pay for without this added expense.
I'd like to thank you for listening, and hope that you take this under serious consideration.
Janice Blalack
From: Atwood, Rawlins County
Impact of Budget Cuts: Loss of HCBS/PD Services
LOC Score: 17
Senator: Stan Clark (40th)
Representative: John Faber (120th)
It is my understanding that the LOC scores have been raised and I no longer qualify to receive Home and Community Based Services. This is distressing for me to find out. The disability that I have does not go away and will never go away. I have Guillain-Barre Syndrome. It is a virus that attacks the sheath of the nerve. It renders me motionless at some points. I will always need the assistance of a cane or walker to get around.
It is my understanding that the individuals that were grandfathered into the Home and Community Based Services Program after LOC scores increased in 1999 are no longer eligible for these services. I understand each year by law I am to be assessed for my needs. My assessment score was 17 this year, which made me ineligible for Home and Community Based Services. I would like you to realize that the 20 hours each week that I received for attendant care helped keep me out of a nursing home and was cheaper for the State, compared to $3,000 a month for me to be in a nursing home. This seems to me that the poorest of the poor are paying the consequences for poor choices made by the State at earlier times. I am not necessarily blaming you for the situation the state is in, but I want you to understand how frustrating it is for me.
The services that I did get from my attendant care worker were: getting groceries, making the bed, laundry, cleaning floors, and driving me to appointments. I am unable to drive and I find it difficult to do laundry due to the location of the building in which the machines are housed. Being taken off of services also means that I no longer get my prescriptions paid for. I can live with having a messy house, but I cannot live without my medication. When I look at Medicaid, my spend down would be so high that I would never reach the amount required by SRS. It is approximately $6,000.
Since I no longer receive help with my prescriptions, it will come down to what is the most important for me to have: utilities, food, my prescriptions or shelter. I can't afford to be without any of them and survive. Can you come and live with me and see if you can make it? Can you put yourself in my shoes and understand where I am coming from? I believe that unless you have been there, most individuals cannot.
I understand that there are individuals far worse off than I am, but the assistance that I received was very important to me. It allowed me to be as independent as I can and also to live as close to a normal life as possible.
Carl Fry
From: Great Bend, Barton County
Impact of Budget Cuts: Lowered Protected Income Level
LOC Score: 38
Senator: Ruth Teichman (33rd)
Representative: John Edmonds (112th)
I am a disabled individual who lives in his own apartment in Great Bend, Kansas. I receive approximately $770 per month from Social Security Disability, and I receive services under the Home and Community Based Services Physical Disability waiver.
I am most concerned about SRS's change in policy concerning the protected income level from the current amount of $715 down to $645 per month. This will have me sending in approximately $125 per month in order to keep my Medicaid and HCBS! Maybe $125 does not sound like a lot to many people, but to me it could mean the difference between having important medicines and treatments or having enough groceries for the entire month. I need these medicines and treatments, which Medicaid does not pay, for my arthritis and thus be able to get out of bed each morning. Seriously, $125 will currently buy me enough groceries to last approximately 10-14 days - take that away in the form of having to pay back to SRS for services, and I'm not sure what will happen. To be fair, yes I am currently paying back approx. $55 per month in the form of a spend-down/client obligation amount and that in itself hurts enough - but, add another $70 to the amount I have to pay back each month and I am worried!
I just do not understand why I cannot have some of the same rights and privileges as other citizens in our State. I certainly am not and will not be getting "rich" on my current SSDI income, and with this proposal of an increased spend-down, I will not be able to have or enjoy many of the other simple pleasures that other citizens enjoy. Instead, I have to worry about being able to pay my rent, utilities, groceries, unpaid medicine, and other expenses each month. Why do we always have to try and balance our government budgets on the backs of the most needy citizens of our State and Nation - the elderly and the disabled? I did not ask to be disabled, and would gladly change places with any politician who thinks I do not have the right to exist, live in my own home/apartment of my own choosing, and to be able to live with dignity and pride in the greatest Nation in the world. Spend one week with me, and then maybe you will understand our (disabled) concerns and even fears of living, and of life on a daily basis/struggle. Please do not add to my burdens - leave the protected income level where it is/has been, at $715 per month, or maybe even raise it to $750 per month!
John Jump
From: Great Bend, Barton County
Impact of Budget Cuts: Lowered Protected Income Level
LOC Score: 44
Senator: Ruth Teichman (33rd)
Representative: John Edmonds (112th)
I am totally disabled and live on what I get on my SSDI check that is $697.00. I can't and am not able to make ends meet with what I get. I have to do without food sometimes just so I can get all of my medicines, which I have to buy now, since I have to have a spend down of $31.00 a month. It may not seem much to you, but it is a lot to me. I even get $10.00 food stamps and that doesn't help me get enough food to last me all month. My rent and utility bills are $589 a month and you expect me to make it on that? I have $107.02 left and I have to buy household items and food out of it and now you want me to buy more of my medicine.
Roger Carter
Age: 62
From: Smith Center, Smith County
Impact of Budget Cuts: Lowered Protected Income, Reduced Reimbursement Rate
LOC Score: 47
Senator: Janis Lee (36th)
Representative: Clay Araund (109th)
Roger worked hard to get out of the nursing home and into the community. "It felt like a prison in the nursing home, because they had locks on the doors and you couldn't get out much," recalls Roger. Now Roger has the opportunity to have dinner and talk with his neighbor and buddy Jim (who also has a disability). He also loves to go to the pond and watch the ducks. Roger is non-ambulatory and uses a wheelchair all day because of his physical disability. With help from the PD Waiver and Senior Care Act, Roger receives PCA assistance helping him to get out of bed, bathe, prepare meals, and do other daily living tasks. His PCA's help him to be independent and stay out of the dreaded nursing home.
For all the hard work that his PCA's do, Roger cannot pay them their full worth. One PCA has worked for Roger for over two years, and he wanted to give her a small raise, but couldn't because reimbursement rates have dropped and not rose, like they should. Now he has to worry about whether he can continue to pay her at her current rate, when she deserves a little more for her hard work and dedication.
In addition, Roger's client obligation went up by $100, making it hard for him to meet his expenses. When he is done paying rent, utilities, and groceries, he barely has any money to buy decent clothes. Roger has been disabled for about 10 years, but before that he worked as a mechanic all his life. He paid taxes and saved his money like all American citizens. Before going into the nursing home Roger spent his entire life savings on hiring his own personal care assistants. He also spent his own money to buy specialized lift equipment for his apartment. Now his retirement savings is exhausted and he wonders why the government won't help him out. "I feel like I am being discriminated against because of my disability," says Roger. It wasn't his fault he acquired a disability, and it isn't right that he had to use his retirement just to live independently. Now he just wants to get some of his money back.
Brad Linnenkamp
Age: 36
From: Lawrence, Douglas County
Impact of Budget Cuts: Loss of HCBS/PD Waiver Services
Senator: Mark Buhler (2nd)
Representative: Tom Sloan (45th)
Brad has Cerebral Palsy, uses a wheelchair, and needs help with his laundry and other household chores that are hard for him because of his disability. Some of Brad's daily living activities and household needs take him substantially longer than a PCA to do and wear down his body and muscles physically. Brad needs all his energy for his job at the Self Advocate Coalition of Kansas (SACK). SACK has advocacy groups and programs for the developmentally disabled, and Brad helps with those programs. If Brad had to spend all his time doing daily chores, he would not have any time or energy to work. A job that gives back to the community, and one that, "I really enjoy, and keeps me busy," says Brad. Furthermore, he needs more help in the winter months when the cold weather affects his body, and his ability to get transportation services. It also affects his scooter as it freezes up and will not run.
While the services he received from the PD Waiver were minimal, they were necessary. Now Brad is being kicked off the waiver because of his score of 17 and he is in danger of losing his job and everything he has. Brad will also find himself paying out of pocket to get help with the tasks he cannot manage himself, making it harder for him to pay the bills. When he runs short of money, he figures he can put off eating for a while and maybe go without heat. (Lawrence Journal World, Dec. 16th)
Marilyn Tuttle
From: Eudora, Douglas County
Impact of Budget Cuts: Taken off HCBS/PD Waiver Waiting List
LOC Score: 29
Senator: Rob Boyer (38th District)
Representative: Mark Buhler (2nd District)
My name is Marilyn Tuttle. I have muscular dystrophy, a progressive neuromuscular disease. It is hard for me to walk and I use leg braces. Before the recent cuts to the SRS budget, I was on the PD Waiver waiting list with a level of care score of 29. I was eligible for the following attendant services: assistance with dressing, meal planning/preparation/cleanup, shopping, laundry, housekeeping, medications, and supervised money management. As a result of the SRS cuts, I became ineligible for PD Waiver services.
Please vote for legislation that restores funding to the SRS budget starting in July of 2003, as Governor Sebelius has proposed. It includes allowing people with PD Waiver level of care scores of 26-29 to be re-eligible for services and back on the waiting list. I really need the personal care services now. Also, more funding is needed for the PD Waiver waiting list so people don't have to wait so long to receive needed services in the community. Thank you for your consideration of my need for PD Waiver services.
Nicole Faire
Age: 24
From: Lawrence, Douglas County
Impact of Budget Cuts: Loss of Job Coach, HCBS hours, and Vision Services
Senator: Mark Buhler (2nd)
Representative: Paul Davis (46th)
Nicole works at a local doctor's office. Her job is her independence and it gives her a feeling of importance in the community. "Her job is so perfect for her, it is her independence," says Nicole's mom. At her job, Nicole helps the doctors by folding towels and sheets, hole-punching papers, and organizing new notebooks, labeling files, and doing other clerical jobs.
Nicole has Smith Magenis Syndrome, a developmental disability, and she receives day services at Cottonwood in Lawrence. Nicole used to have a job coach through Cottonwood as part of the HCBS services. Because of the budget cuts, she can no longer get a job coach, yet she still needs the job coach to keep her on task at her job. That means Nicole's parents now have to pay to provide this service. It also puts them at risk, because they cannot afford to provide any benefits for employees who agree to work as a job coach. Nicole's mom does not like the situation, but will do whatever it takes to help Nicole keep her job. "I'm not about to let her job go," her mom firmly states.
Nicole also lost 21 hours of personal care services. Nicole lives with her parents, and her mom estimates she will have to lose her job to care for Nicole because of the lost hours. Furthermore, vision services for Nicole were cut, and her parents will have to pay that bill also. All of the cuts are putting a tremendous psychological and financial burden on Nicole's parents. It is stressful and they have to make decisions like cutting back on how much to spend on meals, and if they can have any type of entertainment in their life. Nicole's mom estimates she has to pay $700-$1000 a month just to help Nicole stay independent and out of a nursing home.
Mary Johnson
Age: 31
From: Kansas City, Wyandotte County
Impact of Budget Cuts: Loss of HCBS/PD waiver services, Cuts in vision services
LOC Score: 24
Senator: David Haley (4th)
Representative: Broderick Henderson (35th)
Mary says the cuts are going to affect her in many ways and have created many fears. Mary is not only blind, but she is also trying to raise two children. Her elderly mother helps out as much as she can, but because of her age, Mary does not know how much longer her mother might be able to help or what she is going to do when her mother dies.
Cuts in transportation will especially affect Mary. Not being able to access transportation to get to medical appointments will only make untreated medical conditions worse.
Mary needs minimal assistance for basic needs. If Mary would fall, her children would have to call the ambulance, which she would not be able to pay. Cuts in vision assistance are really going to affect her ability to seek medical assistance for her eyesight that is slowly getting worse. Mary worries about cuts in medication assistance as well. Mary's biggest fear is that she will lose her children.
Vervie Davis
Age: 62
From: Kansas City, Wyandotte County
Impact of Budget Cuts: Loss of HCBS/PD Waiver Services
LOC Score: 22
Representative: Bonnie Sharp (31st)
Senator: Chris Steineger (6th)
When Vervie Davis heard about cuts in the HCBS/PD waiver services, she responded, "A whole lot of people need this program, why can't they cut something else?" Vervie has been on the HCBS/PD waiver program for over 5 years. Vervie is in constant pain and walks with assistance of others and uses a cane on occasion.
Vervie has been able to live independently when she received help with personal hygiene, and other basic needs such as bathing. Getting in and out of the shower is a chore and requires the help of another person. Because of the constant pain, she can't sit, stand or lay down for any length of time. Vervie is routinely hospitalized for special nerve block treatments to help with pain management.
Vervie states that she does not know how she is going to make it. She points out that she takes 11 different types of medications and shots for pain. Vervie is concerned that she will end up in a nursing facility, which will cost the State more money in the long run. "I thought that the State wanted to save money during tough budget times?" Vervie stated.
Marianne Fisher
Age: 59
From: Overland Park, Johnson County
Impact of Budget Cuts: Lowered Protected Income
Senator: Barbara Allen (8th)
Representative: Sue Storm (22nd)
Marianne's client obligation will increase from $74 to $156, an increase of $82. She knows these numbers very well, because they will affect how she lives her life. Marianne has Lupus and a heart condition. Because of her disability, Marianne must watch what she eats, but with fewer funds, her ability to buy groceries is adversely affected. She must continue to meet her obligation or she will stop getting her medications paid through Medicaid, and lose services from RCIL.
Living on less money makes it hard to do the little things says Marianne, "When you have your hands tied, it's hard to have any sense of dignity." Marianne points out it will now be harder to pay for a haircut, to get decent clothes, and buy personal hygiene products like shampoo. Marianne recalls the other day when a friend offered a ride, so they could go together to the movies, but she had to decline because she could not afford to see a movie. Marianne feels she should be able to have some simple pleasures in her life, but she doesn't get many, and the more they cut her standard of living, the harder it will be. "It gets very discouraging when you are trying your best. When you should be moving forward, you find yourself falling backward," says Marianne gloomily.
Beverly Saunders
From: Overland Park, Johnson County
Impact of Budget Cuts: Lowered Protected Income Level
Senator: Barbara Allen (8th)
Representative: Sue Storm (22nd)
Beverly is blind and needs a PCA to help her with cleaning, laundry, cooking, and transportation. She is going to get a seeing eye dog in the future to help guide her when she is walking, but currently has to use guide rails, her cane, or another person for direction. Beverly recalls an instance the other day when she made herself some soup, but then missed the bowl completely when she poured the soup. Beverly's client obligation was raised to $230 a month, only leaving her with $564 in Social Security to pay for rent, utilities, phone, and food. With less money to live on, Beverly will have to buy less food just to stay in her apartment. She likes being in her apartment where she can walk around the building, and talk to others. She also enjoys going to meetings for the blind and bible study at church when she can get transportation, since she cannot drive. Beverly wants to continue to do those little things that make her happy. However, with less money to spend, it is harder for her to live on her own. Understandably frustrated, Beverly stresses, "I feel like I'm being hit and I can't do anything about it."
Barbara Bell
Age: 65
From: Overland Park, Johnson County
Impact of Budget Cuts: Reduced HCBS Services/Transportation Cuts
Senator: John Vratil (11th)
Representative: Patricia Lightner (29th)
"I really only have 4 hours of good energy a day," says Barbara. Barbara has Severe Rheumatoid Arthritis and some hearing loss. Barbara has a hard time gripping objects, so it is hard for her to do many of her daily living activities. She also cannot drive, and needs someone to push her manual wheelchair and to do therapy on her joints. Barbara used to get 35 hours a week of personal care hours on the PD Waiver, but because of budget cuts and pressure from area Medicaid managers, Barbara's hours were reduced to 23 per week, and they want to cut more.
Barbara recalls that it was not long ago that she was bedridden for 3 years with kidney and other internal problems. "I thought I was going to die, but I didn't, and now I need to find a life," tells Barbara. Now she is working towards her independence, and doing as much as she possibly can. She says she would like to get a job in the future. However, currently she needs lots of in-home care to be able to stay independent and work towards her goals.
Barbara is also upset about cuts in transportation. She talked to local companies that provide rides to doctor's appointments, and they told her that they just were not getting enough reimbursement to stay in business. For people in Barbara's position, these rides are important to get to necessary appointments. As Barbara says, "If you don't have family or other help, you are in trouble."
Before acquiring her disability, Barbara worked all her life since she was 15. Barbara worked as an editor, writer, and researcher for several companies, government agencies, and some prominent politicians. Barbara is a citizen like everyone else, and needs help with daily living activities to continue her life in comfort. She is worried about what the state is doing to the disabled when cutting services, saying, "People who make the rules aren't around people with disabilities. I don't really think they understand."
William McClain
Age: 51
From: Kansas City, Wyandotte County
Impact of Budget Cuts: Loss of HCBS/PD Waiver Services
LOC Score: 18
Senator: Chris Steineger (6th)
Representative: Rick Rehorn (32nd)
William McClain came to a sobering point the other day when a representative from the hospital that runs the Lifeline Program, a safety moderating program in case of falls or emergencies, came into his apartment and walked out with his Lifeline unit. William thought, "Well, I have not fallen for sometime, but yes, I could fall any day and whom would I call?" The people who work in the building where William lives have been told they cannot answer phone calls or door knocks. Residents need to call the office downtown during normal business hours. Once William does fall, he is down and can't get up without help. His Parkinsons has progressed to the point that he really can't yell for help either.
With the help of the HCBS/PD waiver program, William was able to make the move to living alone, and with minimal amount of help with food preparation, shopping and cleaning. William has done well with the help of the HCBS/PD waiver program and help from his neurologists at KU Med Center. With the 8 hours of help each week, William was able to avoid going to a nursing home that would cost the state much more to take care of him. Now he will be losing his HCBS/PD Waiver Services, and unfortunately, William does not have friends or relatives nearby who can, or even would, take care of him.
Brian Nelson
From: Douglas County
Impact of Budget Cuts: Loss of HCBS/PD Waiver Services
Brian Nelson Lives in Douglas County, he is blind and is currently in remission from cancer. He lost his PD waiver services due to having a score of 25 points. He has lived on his own successfully for nine years with the help of the waiver. He received 2 hours per day of assistance. He does not know how he will accomplish routine activities such as grocery shopping and paying his bills. As Brian says "Believe it or not blindness is a handicap and requires some aid and I have paralysis on my right side caused by a cancerous tumor." He also received assistance with laundry and housekeeping, and does not know how he will keep up - says Brian, "it helped my esteem the way I felt about myself." On a more personal level his attendants helped him read the songs that his pastor would give him to sing in church, as they could not translate the hymnals into Braille.
Marty Simpson
Age: 47
From: Shawnee, Johnson County
Impact of Budget Cuts: Lowered Protected Income Level
Senator: Nick Jordan (10th)
Representative: Stephanie Sharp (17th)
Marty is a Vietnam Veteran and suffers from depression, high blood pressure, and other physical problems. Marty's client obligation will go from $97 to $168 because of the lowered protected income level. Marty needs his medical card because it pays for his medicine, and for minimal PCA help. "I don't know what I would do without my medical card. I'd probably be dead," stresses Marty. Recently Marty's rent went up. When you compound that with the state budget cuts, Marty has no money for food. Marty has to go to the local church to get food, and even then he says his brother many times has to help him with the expenses. "If it hadn't been for the church, I wouldn't have been able to eat," he says. Marty says he tries to just be a good Christian and do as much as he can. The budget cuts not only hurt him, but it scares him that there could be no end to the cuts. As he says, "This is really going to hurt me. Where is the end? What's it going to be next month? I will find myself having to choose between medicine and food."
How the SRS Budget Cuts are Affecting My Life
John Beasley
Age: 45
From: Lawrence, Douglas County
Impact of Budget Cuts: HCBS Waiver Freezes/Waiting List
LOC Score: 43
Senator: Mark Buhler (2nd)
Representative: Tom Holland (10th)
I experienced a spinal cord injury at the Cervical-3 level on April 27, 2002, as a result of a fall. Because I now have partial use of my arms and legs, ongoing physical and occupational therapy is essential for maximum recovery. I use a wheelchair and am progressing toward using a walker. I am a single parent of a thirteen-year-old daughter.
Before the recent cuts implemented by former Governor Graves, I was fourth from the top of the PD Waiver waiting list in December of 2002. My Level of Care score was 43, well over the current Level of Care score of 30. As a result of the PD Waiver waiting list being frozen, I am not receiving the following services I would be eligible for through the PD Waiver criteria: personal assistance with bathing, dressing, toileting, transferring, walking, meal preparation, shopping, laundry/housing, medications and money management.
I recently met my $2,400 spend-down (every 6 months), since I have accrued over $300 in medication costs, and physical therapy about three times a week, costing me $300 each visit. Therefore Medicaid will now be paying for my medication and physical therapy. My spend-down is relatively large because I worked since I was 17, and I'm 45 now. For the last 14 years I worked in manufacturing and production of steel in Kansas, Oklahoma and Florida. I have never had to rely on Medicaid or any other benefit program until now, due to my injury. I want to gain computer drafting skills and become employed doing computer drafting in the steel industry.
I currently live with my parents, who are 65. My mother has had back surgery and has rods in her back. It is important that I get on the PD waiver so I can receive assistance and not have to rely on my mother. I will not be able to rely on family indefinitely for the personal assistance I need.
Thank you for your time and consideration of my situation and need for PD Waiver services.
Sincerely,
John Beasley