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Family Stories



“I Do Live A Full Life …”
A Home-Based Support Services Success Story

Editors Note: The following story is part of an ongoing series we like to include as often as we can. These are stories about how the Family Assistance and Home-Based Support Services Programs have impacted individuals with disabilities and/or mental illness and their families. If you have a story you would like to share we would be honored to include it. Please contact Charlotte Cronin at 309-693-8981. This very real woman is from downstate Illinois who has asked that her name not be used.

Some friends and I went on a canoe trip this weekend and I was thinking about how far I’ve come since I first got state-paid skills trainers from the Home-Based Support Services Program (HBSSP) in 1990.

I’ve learned to be quiet and think about what to do and say in a group as opposed to just blurting out something. I’ve learned to say a little prayer in my heart that God and Jesus would give me direction. I’ve learned to accept the need to take medication to level out my moods. I’ve learned to use community and public facilities and go outside of my strict daily routine without getting unbearably nervous.

On the canoe trip I was able to be responsible enough and self-directed enough to watch the group campsite and occupy myself with reading while other campers went out on the river in canoes. I have enough initiative to be self-directed and bring my own entertainment. I can think and plan ahead.

I packed personal items, reading materials, and my snacks and kept them in my own space during the travel trip. I did not just dump all of my camping supplies on the other campers but kept my own stuff under my own management.

I did not have a screaming fit because things did not go the way my nervous system needed them to go as I have done before.

When I was 11 to 22, I continually heard things (accusations) in my head. This is a form of schizophrenia, a mental illness. I was terrified that someone important to me would find out how bad a person I was. I “acted out” because I was afraid to verbalize. When I was older I had to learn to verbalize: to talk about my inner life, my fears, hopes, and dreams. I had missed out on this “learning to verbalize”. Speaking up and speaking out is something I continue to learn how and when to do. I am learning to trust people not to put me down as I learn to talk about these things with my skills trainer and friends.

Some of these things I’ve shared with you might be like your own life or the life of a loved one. You can learn that you are not alone.

National Association for Mental Illness and the HBSSP are both helpful programs. May the Lord Jesus guide you as He has guided me so you can also have friends and know what it is like to be cared about and have good, happy times in your life. We say in the church that In Christ you live a full life. I do live a full life with other people’s help and am no longer overwhelmed by too much for one person to do.

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Tricia’s Story

Editors Note: In each newsletter of the Family Support Network, we try to include a “real life story” of an individual or family receiving services from the Family Assistance or Home-Based Support Services Programs or the story of an individual or family waiting. In this edition, we are excited to share the story of the Camp family who was selected in the drawing of 400 this January. This article is by Mary Camp. Mary lives in Peoria with her son, David, and daughter, Tricia.

There are many milestones in the life of a child that are celebrated. If your child has a disability those celebrations are accompanied by a blanket of fear and questions. None have been as great as worrying about my daughter, Tricia’s, future.

Tricia’s life is complicated. She has multiple disabilities that require a lot of care. She has five doctors. She takes a lot of medications. She needs lots of equipment; a ramp into the house, modifications to the bathroom, a wheelchair, a positioning stand. Tricia needs constant assistance to meet her personal care needs like dressing, toileting, bathing and eating.

How can I be assured that those who care for her will provide the care and love she has at home? The answer is that no one can replace the person she knows as mama. The only answer is to keep her home for as long as I am able. Without help, however, that “as long as I am able” was coming to an end. Then a letter came. Tricia’s name had been chosen for the Family Assistance Program. I cried.

For days, when I went to greet her smiling face in the morning, my thoughts were, “I can keep her home!” With this financial help, I can greet her with “Good morning, my darling girl” thousands of more times.

This week, I bought her a new pair of shoes for the first time in six years. I bought her a spring coat for the first time in her eighteen years of life. These are little pleasures. Presently, I am looking for a personal attendant to stay with her after school and in the summer. Now I will be able to help pay for that. Tricia has been enrolled in the Family Assistance Program for three months. We are in the process of buying a new van with a lift. Our old one was 12 years old and we didn’t know when we could replace it.

Tricia will be transitioning to the adult world sooner that I care to admit. Before this support, I didn’t know what she would do with her time after graduation. It costs $800 a month to enroll her in day training at our local Arc. I couldn’t afford that. If Tricia had to stay home, so did I. I am the sole support of our family.

I know how badly families need this support. Too often families struggle with so little. There was a time when I did not even have money for diapers for her. This kind of support needs to reach as many families as possible.

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The Home-Based Support Services Program (Better Known As A Gift From God)

Editors Note: The following story is part of an ongoing series we like to include in each of our newsletters. These are stories about how the Family Assistance and Home-Based Support Services Programs have impacted individuals with disabilities and/or mental illness and their families. If you have a story you would like to share we would be honored to include it. Please contact Charlotte Cronin at 309-693-8981. This very real woman is from Central Illinois and has asked that her name not be used.

Mental Illness can strike anyone. I was voted most likely to succeed in high school. I was Salutatorian and graduated from Illinois State University in 1973. At 23, I was working as a School Librarian and my mother was dying of cancer. This is when I had an exhaustive nervous breakdown. I was labeled an Acute Schizophrenic. I’ve been called many different psychiatric labels. Over the next nine years, I had treatment sessions with private psychiatrists, was hospitalized on the psychiatric ward at least 10 times, attempted suicide twice, and obviously had difficulty holding down a full-time job. The first time I tried suicide, I took 29 sleeping pills, plus other pills, and locked myself in the house on a Monday evening. When I didn’t come to work Tuesday, they called my stepmother. By the time they got me to the hospital, I had stopped breathing. I do know depression. Of course, when I quit sleeping for a couple of days, I know the manic side of my illness. It took a very wise woman psychiatrist to diagnose me and get me on the right medication. My correct diagnosis of my illness is Bipolar or Manic Depression.

I struggled with having enough money for medical insurance. I’ve never had trouble paying for medicine as some have because I qualified for a medical card. But I didn’t always get the best of care since I had a green card. I never went hungry and always had a place to live because of my dad or brother. I struggled to pay bills and fell under the trap of credit cards to some extent. I’ve learned to be wise in using them and do not have a major credit card. But I get applications in the mail all the time for them. I’ve lived on unemployment, teacher aide’s salary, and CEDA jobs. I’ve had it easy compared to some people I know.

Between 1982 and 1983 I became totally unemployed and wasn’t taking care of my home or myself. I had two more hospital stays that summer and my father stepped in and had me admitted to a nursing home. I lived at the nursing home a total of seven months, attended a day treatment program and moved into a group home. From there I progressed to an apartment program where I lived alone. I continued with the day treatment program and volunteered my time at a grade school library. From there I moved into a house owned by my brother. I kept active with church activities and volunteered with our public library. Then, in 1989, I was courageous enough to sign up to substitute in our public schools.

In about 1990, I got a flier in the mail to sign up for the Home-Based Support Services Program. I had no idea what this program was about. But it mentioned helping with going to work, so I returned it in the mail. I really didn’t think much about it after that. I was notified that I was on the waiting list for Home-Based Support Services Program. In April of 1991, I was accepted to the program. I had no idea how useful and wonderful this program would be to my life. To me, this support program is a precious gift from God. I wish more people could be as fortunate as me.

In the Fall of 1991, I took 2 sociology courses from our community college. That was one of the first things I used my money for. I love to go to school, (it’s a teacher addiction) and never had the extra money for tuition when on SSI or Supplementary Security Income. Going to the Community College was healthy for my mind instead of just watching TV. I continued to take courses at our community college until I graduated with a Child Care degree in July of 1994. A month later I was hired by Head Start and am still working there. Nine months of the year I work with 34 preschoolers that are very active and keep me so challenged. I get very exhausted but I know I’m needed by these inner-city children.

One very valuable item I get from the Home-Based Support Program is counseling. I see a Christian counselor, Anita, and she is a stable force where as psychiatrists seem to come and go in my town. I can reach Anita at home and she knows me very well by now. When I had my hysterectomy, she noticed changes in me that I didn’t. She encouraged me to see a different psychiatrist and helped me to continue to function at work. Anita and I pray together after each meeting. I respect her opinion and we are friends.

The Home-Based Support Services Program has changed my life in that I’m able to afford eye glasses, dentistry, and so many necessary health related things that my salary or SSI would have trouble paying for. I’ve gotten vitamins that were recommended by a psychiatrist. I’ve had a bridge, 5 crowns, and 2 root canals done by my dentist.

I was able to go places by cab places before getting my car. That was very helpful for my family and helped me feel more independent. After I started working at Head Start, I saved money through a PASS program to buy a car. I got a used car in July of 1995. I hadn’t driven in 12 years. Aren’t you glad you didn’t live in my town and had to be on the streets with me those first few months?

The Home-Based Support Services Program has helped me with housekeeping. This is an area of my life that I get overwhelmed with. This was my downfall before going to the nursing home. A high school friend, that is also a teacher, has helped me clean, pitch, and organize my house. We’ve done this a few summers. She gives me that push and motivation I need. I have trouble deciding what to pitch and what to keep. We have just spent this last week together. She’s a saint for not wanting to kill me. Debbie is a hard worker and my house looks so much better when we’re done.

One of my happiest days was my birthday last year. My case manager, Kayla, helped me get a computer. The Mental Health Center paid the computer company and we paid them back in monthly payments until it was paid for. I also took another community college course this spring semester about computers. I told you the Home-Based Support Services Program is a gift from GOD. I got my computer on my birthday which is Christmas Eve. What better Birthday and Christmas present from God. I use my computer for many things I use the internet to research my Genealogy, which has been a hobby of mine for 30 some years. I use it to write letters, etc. I correspond with other Christian women on a mailing list. I have many friends with computers, so we keep in touch this way. I make greeting cards on my computer. The Home-Based Support Services Program has bought some software and books for computers. I’m thinking of taking another computer course in the fall. I am so excited to have this computer.

I have trouble controlling my weight. I’ve gotten exercise equipment from the Home-Based Support Services Program. I’ve purchased tapes for the Weigh Down Workshop with money from the Home-Based Support Services Program. I’m fighting the battle of the bulge that I’ve fought all my life. With the medication I take plus my sedentary life style, this is a definite problem in my life.

Kayla and I are looking into getting me a camera as photography is also a hobby of mine. I’m really looking forward to that. Kayla has been just wonderful in helping me spend my allotted money wisely. I’ve had so many special case managers from our Mental Health Center.

The Home-Based Support Services Program is cost affective. It is cheaper to pay the services I get than to house me in a nursing home. I’m sure I could have slipped back into the mind set of fantasy without my doctors, medication and counseling. I also have recreational items like the computer. I know of other people with my condition that are in need.

Yes, I was voted most likely to succeed. I even voted for myself. I haven’t found the cure for cancer even though at one time in my illness, I thought I might as well do that along with everything else I was trying to do in my life. I’ve struggled with Manic Depression and I have succeeded. I’ve fought my way back to sanity. I am a teacher and that’s what I’ve always wanted to be. I work and pay taxes like anyone else. I still qualify for SSI. I know a Gift from God and I plan to keep it.

MOM WOULD BE PROUD.

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A Dream Come True
Family is One of 230 in New Selection!

Editors Note: In each newsletter of the Family Support Network, we try to include a “real life story” of an individual or family receiving services from the Family Assistance or Home-Based Support Services Programs or the story of an individual or family waiting. This edition, we are excited to share the story of one family whose name was drawn to start receiving services as a result of the $1 million increase in the Family Assistance Program.

Kent Schuette is the parent of two sons. His older son, Jake, is 15. His younger son, Benjamin, is 13 and has Angelman’s Syndrome and Cerebral Palsy. They form a bachelor family. They feel lucky to live next door to Kent’s parents.

Benny is an adorable child with big blue eyes. His granddad says he would eat anything including a fence post as along as it has peanut butter on it! He loves fishing and cooking shows. One time he tried to make himself into a chocolate sundae, pouring Hershey’s syrup over the top of his head and into his shoes!

Kent has chosen to work at home. He has become a registered investment advisor and does financial planning. Working at home allows him to give Benny the attention he needs. And Benny needs 100% attention. He knows when dad goes in the bathroom. He knows when he gets off the phone. Kids with Angelman’s Syndrome often have problems with sleeping. Kent feels lucky that Benny sleeps at night. But, Benny won’t sleep anywhere but with his dad.

In July, Kent got a letter from Department of Human Services telling him he had been selected to apply for the Family Assistance Program. He read over it quickly once and then a second time, thinking it couldn’t possibly mean what it was saying. Kent says, “It is a very, very pleasant surprise. I hope we’re worthy to receive it.” The Schuette family hasn’t decided how to use the extra financial help yet. Kent listed a long list of possibilities including respite care, medication, health insurance, and having Benny’s teeth filled. Benny has not been in for dental work since he was six. A simple procedure for Benny requires anesthesia and an operation room so it can cost $1500 just to have a tooth filled!

Kent’s advice to the families who read our newsletter, “Keep applying!”

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Charlie’s Story

Editors Note: The following story is part of an ongoing series we hope to include in each of our newsletters. These are stories about how the Family Assistance and Home-Based Support Services Programs have impacted individuals with disabilities and/or mental illness and their families. If you have a story you would like to share we would be honored to include it. Please contact Charlotte Cronin at 309-693-8981. In the following story, in order to protect a fragile young man, we have chosen not to use his or his mother’s real names.

“Charlie” is a very real eleven year old boy who lives in down state Illinois. In many ways Charlie is just like other kids. He has two cats. He likes to ride his bike and he is inquisitive about the stars. Last year, Charlie was the top popcorn seller in his Boy Scout Troop. And this winter when he discovered an older couple in his neighborhood needed help, he volunteered to shovel their snow.

But Charlie has big struggles in his life. When he was four years old, Charlie was diagnosed with severe ADHD, as having Cyclical Depression, and as being Oppositional Defiant. When he was little, Charlie was repeatedly asked to leave daycare centers because of his behavior. He struggles to sleep through the night. Sometimes he needs to be physically contained to keep him from hurting himself and others. He has been psychiatrically hospitalized three times in his life. His mother, we’ll call her “Laura,” was told to prepare for the day she would have to place Charlie in an institution, away from their home. Her response was, “Never!”

Because of the Family Assistance Program, Charlie still lives at home. Laura still wins that battle. Laura is a single mom and Charlie is an only child. The Family Assistance Program directed by DMHDD helps meet expenses so that Laura doesn’t have to work full time. It helps pay for therapy, social skills training, medications, and visits to the doctor. And it helps pay for Scouting equipment for a lonely boy who has trouble making friends and keeping them.

Without the Family Assistance Program, Laura feels sure that Charlie would be living away from home in a state run facility. Instead, after four years in a self- contained program for children with behavior problems, Charlie is in regular fifth grade with some extra supports and he’s “getting it together.” “Hats off” to an extraordinary mom and son. And “Hats off” to a program that remembers that home is always still the best first choice.

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What One Dad Said

Bill Kienzle, of Polo, IL. was one of a number of parents and family members that testified before the House Appropriations Committee on Health and Human Services concerning the DMHDD Budget and, of course, specifically, the Family Assistance and Home-Based Support Services Programs on March 28th. This is what he said:

“More importantly, I am Mandy’s Dad.

This is Mandy (holding her picture up). She is an eight-year old girl diagnosed with severe, multiple, disabilities—primarily Cerebral Palsy and a severe seizure disorder. Mandy does not walk, and uses a wheelchair for mobility.

Mandy has two older sisters, Jennifer, 13, and Sara who is 9 going on 23. Mandy has reached an age and weight where additional assistance for her care is vital to relieve the physical and mental stress of Mandy’s primary caregiver, her mother.

In the past year, Mandy’s mother and I have considered placing Mandy in an out of home placement. If this would be a state operated facility, the cost to the state would be approximately $84,000 per year as compared to that of the Family Assistance and Home-Based Support Services Programs which averages approximately $6,000 per year. Obviously, this program makes great economic sense for the State of Illinois.

Furthermore, in a time when lawmakers are “talking the talk” about Family Values, I would encourage you to “walk the walk” by supporting a substantial increase in funding for the Family Assistance and Home-Based Support Services Programs. Please don’t force families to separate brothers and sisters from each other due to the lack of support given to the Family Assistance and Home-Based Support Services Program.”

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