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Name: Julia Barrett-Martinelli & Family on Jul 28, 2010Comments: Sometimes I think my story is just to sad to tell. My son Richard was involved in an accident when he was 18 months old. We almost lost him. It was such a grief I still cannot believe our family lived through it. The almost loss of my baby was a horror I cannot give words to. Richard survived and was left severely brain injured. He is now 22 years old. He is blind, nonverbal, tube fed and in a wheel chair. He has an uncontrolled seizure disorder and is among life's most medically fragile. We are often frightened by his unpredictable condition. We chose to care for him at home because we love him. The roles we take on daily include doctor, nurse, therapist (OT, PT and Speech) teacher, caregiver, companion, advocate, parent and friend. All this as everyday life marches forward. Most people would agree that our schedule is grueling, some would run away, some would have chosen an institution for Richard. The institutions have many services and assistive technology that would benefit him. As we watch his services erode away we are faced with the reality that the HAVES are the people now in the institutions and the HAVE NOTS are those disAbled on the outside. We are afraid for his future. He deserves a quality life of his choosing. We want to care for him, we are vested but the task is monumental. This is The United States of America. The country that passed ADA and my story is about a family terrified of losing a member because the team HAVE NOT or NONE grows daily in South Carolina. The Martinelli Family Julia, Marty, Cheserae & RichardFlag
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Name: Camille Barwick on Jul 29, 2010Comments: I have a physically challenged son that is totally dependent on especially his special needs through Disability and Special needs. I think all these cutback on specal needs and diablities is totally rediculous. It seems to me as much as our government waste money, they could find other areas of cutting some of these funds.I feel that if these people had to walk a mile in our shoes for a day that they would understand how important these services are.Flag
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Name: Camille Barwick on Jul 29, 2010Comments: I have a physically challenged son that is totally dependent on especially his special needs through Disability and Special needs. I think all these cutback on specal needs and diablities is totally rediculous. It seems to me as much as our government waste money, they could find other areas of cutting some of these funds.I feel that if these people had to walk a mile in our shoes for a day that they would understand how important these services are.Flag
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Name: Rosemary W. Boling on Jul 29, 2010Comments: I write this story as a provider for individuals with special needs and disabilities. I have become acuity aware of this growing group within our society. Three years ago i was lucky enough to get a job in a Medical Adult Day Care. At that time the center had mostly elderly individuals that were living with adult children that needed to work. These individuals had mental challenges related to Alzheimers and other mentally challenging diseases. In that little cluster of people there were also a small group of young adults that were graduated from school but were also mentally challenged; their families facing the same situation as the elderly population. The young adults had parents that needed to work but more importantly the young adults had the need to have their own friends, their own place to find out who they were and a place to learn just what they could do in an adult world. I begin to notice that there was a group of these special needs young adults located in the Goose Creek, Summerville area. I have active family members and the word of mouth that someone wants to help us soon spread. Where I thought there was a group only in the Goose Creek -Summerville are , I soon discovered that this group is very large and is all over the low country. In the last year I have had the priviledge of working with most of the high schools in this area, as well as alot of wonderful teachers and parents. The group of young adults that I serve are not the ones who will get jobs, live in a group home, or work in sheltered workshops. They are the profoundly medically needy ones. Their hope is to have a friend they can call their own, learn walk without a parent helping them, learn to fed themselves, walk with a walker for the first time, or have someone recognize them as a young adult and not a handicapped individual. Most of the clients I serve depend on funding fro DDSN or Medicaid, without funding these individuals will have to stay at home or be placed in instiutions for the remainder of their lives. If this happens we will be back to the 1960s and 1970s when we were ashame of these percious individuals. I have seen that they have all the same hopes, dreams, desires as the typical individuals that we share the world with these days. Without funding where will this group go to meet their dreams. More importantly what will their parents do? This group of parents would never put their young adults in an instiution. They made the decision some time ago to bring them into the world and care for them as part of a loving family and community. The likely result would be one or both would quit work to care for the young adult at home, because most are dependent on funding to care for their person. The providers would then be without jobs due to the lack of clients needing services. South Carolina already has a high unemployment rate continue to cut services to the special needs community and watch the rate soar to levels no one ever thought about. The time is now to stop the never ending cuts and saving the state's budget on the backs of individuals whom will always need care and funding. They have no hope of ever getting better, just a hope to live a live somewhat like their typical counterparts.Flag
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Name: Tracy Wiles on Jul 30, 2010Comments:Flag
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Name: Corbett Rothwell, R.N. on Aug 2, 2010Comments: I have been the registered nurse/center director for Pee Dee Active Day Center in Florence, SC for the past 7 years. I see daily the profound needs of the cognitive and/or physically disabled clients that we serve. I also know how challenging it is for them and their caregivers to meet their needs, physically and financially. There are many more inquiries that we receive that are unable to receive these services due to statewide medicaid-waiver program waiting lists. The average time spent waiting on these lists is about 8 months, at present. Most of our inquiries can not afford to pay privately for 8 months or so while they wait for assistance. Thank you for reviewing this petition and considering the needs of the elderly and/or disabled of South Carolina in your future decision-making.Flag
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Name: Kim Bluthardt on Aug 3, 2010Comments: I am fortunate to not have a story to share, But I have several friends who do and this situation affects each adn every one of them. I know the Martinelli's who shared their story on this forum and I am HONORED to call them my friends. The love and devotion they have for Richard amazes me on a daily basis.Flag
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Name: Carolyn Mann on Aug 7, 2010Comments: Brittany was born with Cornelia DeLange Syndrome, to dual Active USN parents. Mom was fitness coordinator, not smoking, drinking or drugging, excercising at least five days a week, and eating healthy. Brittany was born the third of four children. There were no indications of complications. Full term delivered through emergency C-section weighing 4lbs 1 3/4 oz, 17 inches. She had failure to thrive, a battery of test and endless doctors appointments. Life expectancy early adulthood. MIsdiagnosised for four years having severe reflux. Causing future hips problems. It is a constant daily struggle of love to keep her sustained and growing. Amazing how one can love so deeply that all the hours of docotrs appointments and sleepless nights are overcome for one crooked smile. The amazing strenght and resislence and high threshall to pain has enabled her to live a resonably comfortable life. Brittany has endured numerous surgeries, gastric, eye, hips, palate, extractions, ears and I am sure others. Though right now stable. With the assistance of provided day care I am able to work part time an even take a night off from the 24/7 daily care and routine, of changing diapers, dressing, feeding, brushing teeth and hair, transporting to day center, picking up and feeding, bathing, taking her for a walk, medicating brushing teeth and putting her to bed. I feel lucky Brittany is small at 23 yrs she only weights 52 pounds which at present is not a problem for me to carry but I often wonder for how long? As I am not getting any younger. What happens to her in the future? If institutionalized she will surely die as it is a constant vigulance of the right doses of medication that keeps her healthy and pain free. Brittany receives diapers, wipes, respite, and day care services. All of which enables us to provide a roof over her head and food on the table. She is very socialable and often walks up to men while shopping. Though she cannot speak and is hard of hearing her love for life is very appearant and forces one to smile dispite a crooked walk and hunched over body. It has been a constant struggle to get services for Brittany, but I am a mother and a strong advocate for what I feel is a must to sustain Brittany's quality of life. I am not extravagant just the basic for safety. It bothers me that this great country feels the need to let big business and government steal from the mouths of disabled and elderly. How can it be that we provide food to other countries and let our own country starve. Even on a plane they tell you to place the oxygen mask on your face first before placing it on someone else. I am willing to do what ever it takes to keep Brittany alive, pain free, and healthy.Flag
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Name: Victoria Reifer on Aug 10, 2010Comments: I have a sister who is now 23 years old and is severely handicapped. The funding allows my mother to continuing working and suppliment My sisters income. With cutbacks parents wont be able to work the hours needed to even support themselves let alone someone with special needs. We as Americans have no problem giving money to other countries or allowing politicians to line there pockets. It is time we all stood up and said no more. Feed our hungry and take care of our sick before we help others.Flag
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Name: Diane Monroe on Sep 9, 2010Comments: My grandson, Kingsley, who is nine (9) years old, has Cerebral Palsy. Kingsley can never be left alone. He cannot walk, sit on his own, feed himself, dress himself, write or read but learns everything orally. His family has raised him to believe he can do anything. People who know Kingsley will describe him as a huge sports fan with a great sense of humor and always has a smile on his face. As one of his teachers said, “he is a passionate person who brings that passion to those around him” and “he brings joy to all he comes in contact with through his positive outlook on life!” BUT, the family needs help! Kingsley is getting older and harder to care for….he needs someone with him at all times. Even though he can talk and understand what you are saying, you can never leave him alone; he has too many limitations. You still have to dress him, feed him, take him to the bathroom, exercise his legs and arms, change his positions, and that’s just the activities of daily living. A child or adult with a disability has many day to day concerns and as Kingsley’s Mom said, “day to day activities that most people take for granted are very difficult for each family”. For example, when going anywhere you always have to take into consideration parking, access to buildings, is there a ramp, will his wheelchair fit under the table among many other concerns. Kingsley has been denied a “Medicaid Waiver”. We need help caring for him and we do not understand why with all the special needs he requires that he has been denied a Waiver. There is something wrong with this scenario – please review the Medicaid and DDSN guidelines and re-evaluate who is eligible for a Waiver and who is not. There are so many disabled children/adults that need special services. PLEASE DO NOT take funding away or disallow any services. Help families with special need children or adults…they need to be home with their loving family and the State of South Carolina needs to help provide for their care. By taking these children/adults out of their homes is not only traumatic for the family, but does not even make sense in terms of the State budget for the disabled. It’s hard to believe that these policy makers would accept their child or family member to be “put away”.Flag
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Name: Jennifer Feinman & Family on Sep 9, 2010Comments: Kingsley Feinman is a nine (9) year old boy who was born with Cerebral Palsy which affects all four extremities. I want people to understand that this is a unique journey our family is on. He is deeply loved and has as a therapist once said the “Cadillac” of care. In order to provide for Kingsley our family has to work together (MOM, DAD, BROTHER, & GRANDMOTHER). Kingsley is verbally an excellent communicator and is the happiest child I know. He knows that he is different than most of the other children but has a life spirit that puts most children and adults at ease. He has been raised to be proud and satisfied with who he is. The day to day care for him is however very daunting and truly takes a team of people to give him the best quality of life which he deserves like everyone else. Kingsley is unable to feed, dress, potty, write, read and he is considered legally blind. He has never slept in a room by himself. He is unable to change positions throughout the night so a caretaker must be nearby to make him comfortable. Every day has to be highly orchestrated and planned. He also has a swallowing problem which at times is terrifying and life threatening. The older he gets the harder it is to lift, move, travel, etc. We were told that he would qualify for a ‘Medicaid Waiver’. The Waiver would allow us to hire help for his care. He was denied twice the reason being “he is too smart”. Even families that do not have a child with challenges cannot make sense of the States denial of the Waiver. I would welcome a person who says he does not need the Waiver to spend just one day taking care of Kingsley, and then explain rationally who does deserve the Waiver and why Kingsley does not. Kingsley is the love or our life and we, like any parent, want the best for our child. The policy makers who have no personal experience with the disabled should be ashamed of themselves. I honestly do not know how people sleep at night and create policy for the disabled without the proper research that is required for our special need children/adults. We need policy makers to stop cutting resources for our most needy citizens.Flag
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Name: Carolyn Mann on Sep 30, 2010Comments: As a retired military member raising four children one being profoundly mentally handicapped. I was amazed by the poor quality of assistance from member who were receiving federal funds to assist parents like myself. It's hard enough to have to deal with all the physical ailments and numerous doctors appointment but then to have the schools complain about not having parent participation and when you monitor them they become defensive and have you arrested. Or worse yet use your child as punishment for ill behaved children to have to push your child around the gym. (Not to reward children's behavior but punishment.) And trying to get assistance from many of the boards of disability would be laughable if it wasn't needed. Some Directors (Dorchester County) are so aggressive in blocking all assistance you wonder why even have a disability board in place. They place more road blocks and set up more obstacles just trying to get someone you feel comfortable with to sit with your loved one so you can get a much needed break called respite is nothing more then a scan for the board of disability to justify their jobs by giving you one piece of information required at a time instead of having the whole state uniformed. Would it make more sense and be cost effective to have respite providers view a video, test out and submit the required back ground checks to one central location instead of each board changing the rules to suit their personal agendas. We have members working for medi-caid who don't check to see how much is being charged for equipment why are they not searching for cheaper equipment an over sized stroller cost $3200 come on a group of high school students could build one for thousands less why does it cost $250 for a seat belt to be added. Those people working for the board of disabilities or medi- caid should be searching solutions to reduce the price what about having a correctional facility manufacture oversized strollers and potty chairs. We are out of control spending money on everything but the individual who needs thte services. You have Judges requiring you to have an attorney present to say you're the guardian even though you have a doctors statement saying your loved one is profoundly retarded and you have a birth certificate saying you gave birth to the individual all because of HIPPA. Since when does a judge have the right to force you to have an attorney what about being able to represent yourself. We give free attorney's to any criminal but to a profoundly retarded adult that the mother is caring for in her home they all sorts of information about anyone living in the home. Well my daughter makes $439 a month an attorney cost $200-$300 an hour. I am proud to live in America and serve my country what other country provides free attorney if a criminal can have a free attorney why can't a profoundly mentally retarded adult have one. As a parent I try to save tax payers money even though approve to receive an over sized potty chair at the price of $1000, I brought her broken potty chair to friends who fixed it for free and when I asked how much it would cost them to make the over sized potty chair they said $40 so why are these company's charging medi-caid $1000 because they can!!! The people who fixed it work at a prison they used scrape wood and their lunch hour. Shame people who are getting paid couldn't work to try and save money. Why doesn't the board of disability seek ways to partner with MUSC medical students and provide respite to parents (killing two birds with one stone) it could be students needing to provide 100 volunteer hours and parents like myself seeking qualified individuals to care for our loved ones. Everyone seems to be complaining but no one is actively seeking cost effective solutions.Flag
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Name: Michele Lichtenberger on Oct 1, 2010Comments: My husband and I thought we had a healthy child at birth, but at four months-old Cory was diagnosed with a seizure disorder. He is 23 years-old, the oldest of our three children, he was diagnosed with cerebral palsy, he is profoundly mentally retarded, wheelchair bound, quadriplegic, and has to be fed through a tube inserted in his stomach. Cory is totally dependent upon others for all of his daily living skills such as diapering, tube feedings, movement, and bathing, We choose to care for Cory at home, as we love him and believe that he would want to live at home with the people that love and care for him most in this world. We want to do this for as long as we are physically able and he is able to thrive in our care. Even with the help of our two adult daughters we are unable to provide for all of Cory's medical, physical, emotional, and financial needs without assistance. When Cory became too old to attend public school, the only options available were two adult daycares or keeping Cory at home. Since Cory psychologically requires socialization with peers and both my husband and I have to work, we chose to enroll him in a daycare. There he gets the socialization he needs, receives physical and occupational therapy and he is monitored by nursing staff for his medical needs. All of this provides Cory with a quality of life that we alone could not provide. With our private insurance and the assistance Cory currently receives he is able to attend daycare, receive therapy, diapers, diaper inserts, pads, and special formula and equipment for his feedings. He receives a few hours of home health a week to care for Cory while we are at work and to assist in lifting him in and out of the tub. It would be devestating to Cory's life, well-being, and our family as a whole, if funding were cut and his services and assistance deminished. We are hard-working, tax paying, parents trying to help our adult son who has been crippled with a devestating condition. He is not able to care for his own basic needs and we cannot afford to quit our jobs to care for Cory 24-hours a day. We are grateful for the assistance that he currently recieves and are careful to utilize these services conservatively. With Cory's overwhelming medical, emotional, and physical needs, we attempt to meet as many as we can on our own. His needs, however, far outweigh what we alone are able to provide. Without the services and materials he currently receives Cory's quality of life would be diminished and our family devistated.Flag
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Name: Deborah Delaney on Mar 6, 2011Comments: * Message: My name is Deborah Delaney,I am 59 yrs old. August of 2010. I had alot of problems with my husband.He is a retired Navy Veteran but,is also and alcholic & is a very intimadating individual.I tried after calling the police on numerous occasions, about coming home and verbally & mentally abusing me & threatening me. But the police was no help, so I when tothe Summary court and the lady there told me to fill out papers to take him before the Judge so I did.That didn't do me any good either,even though the Judge told him if he wouln't comply he ought to lock him up.ut then the Judge gave him a week to think about changing his mind about complying with the court.We went back to court and he complied by talking to these Doctors and then the judge said ,he could go.So nothing was done.I believe nothing was done because he is a Mason.Anyhow I decided that I couldn't take the abuse any longer so I was making arrangements to get my family to help me pack up my belongings. I've been disabled since July of 1997,from a drunk driver hitting me head on in a car crash,my whole spine from top to bottom is messed up. I have to use Pain patches just so I can get through the day without so much pain. I also have Sleep Apnea,so I use a CPAP machine with a oxygen concentrator hooked to it. Being that I was threatened alot & verbally & mentally abused alot I had to leave,because he wouldn't leave. So onSept. 2010 I was trying to get my stuff packed and loaded onto a U-Haul,my husband was already drinking and starting giving me alot of grief to the point I called the police,they told him to stay outside and leave me alone. afew hours later when he was really Drunk he came in the hose and went into our bedroom into his closet and got his Samari Sword out of there,I was following himso I could lock the door ,but before I could do that he turned around and said to me I'm going to cut your Mother F___king Head off. Then I immediately called 911and told them what happened.When they got there and knocked on the door I answered it,and went outside.The 1st thing the officer said to me was ,What DRUGS ARE YOU ON! I( was totally baffled,I couldn't even say anything and they slammed me up against my back door and put hancuffs on me.I kept asking what are you arresting me for and No one would anwer me. I got put in the back of the police car in handcuffs that were on extremely tight.I was crying cause I didn't understand why I was going to jail,when it should have been the other way around.I'm also incontient and while I sat in jail all night I soaked myself and had to go and get a mug shot and my fingerprints were taken,then I had to go before the Judge with myself all PEE PEE'd up,my clothes was soaked I was so embarrassed. I found out then that the police went in my house without my permission and took all my prescribed medicines and my medicine tray also.I never got back my medicine tray that had over $400.00 worth of medicine in it. So when I got out of jail I called my son and he came and finished packing for me because I wasn't in any shape to do any of it,due to my nerves were shot. So I had nowhere to go except to my Son's in Anderson,S.C. Now I don't have any place to live and no car to get around in either. So see I'm between a rock and a hard place. Deborah E.Delaney my cell No# 843-534-3145Flag
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Name: Deborah Delaney on Mar 6, 2011Comments: * Message: My name is Deborah Delaney,I am 59 yrs old. August of 2010. I had alot of problems with my husband.He is a retired Navy Veteran but,is also and alcholic & is a very intimadating individual.I tried after calling the police on numerous occasions, about coming home and verbally & mentally abusing me & threatening me. But the police was no help, so I when tothe Summary court and the lady there told me to fill out papers to take him before the Judge so I did.That didn't do me any good either,even though the Judge told him if he wouln't comply he ought to lock him up.ut then the Judge gave him a week to think about changing his mind about complying with the court.We went back to court and he complied by talking to these Doctors and then the judge said ,he could go.So nothing was done.I believe nothing was done because he is a Mason.Anyhow I decided that I couldn't take the abuse any longer so I was making arrangements to get my family to help me pack up my belongings. I've been disabled since July of 1997,from a drunk driver hitting me head on in a car crash,my whole spine from top to bottom is messed up. I have to use Pain patches just so I can get through the day without so much pain. I also have Sleep Apnea,so I use a CPAP machine with a oxygen concentrator hooked to it. Being that I was threatened alot & verbally & mentally abused alot I had to leave,because he wouldn't leave. So onSept. 2010 I was trying to get my stuff packed and loaded onto a U-Haul,my husband was already drinking and starting giving me alot of grief to the point I called the police,they told him to stay outside and leave me alone. afew hours later when he was really Drunk he came in the hose and went into our bedroom into his closet and got his Samari Sword out of there,I was following himso I could lock the door ,but before I could do that he turned around and said to me I'm going to cut your Mother F___king Head off. Then I immediately called 911and told them what happened.When they got there and knocked on the door I answered it,and went outside.The 1st thing the officer said to me was ,What DRUGS ARE YOU ON! I( was totally baffled,I couldn't even say anything and they slammed me up against my back door and put hancuffs on me.I kept asking what are you arresting me for and No one would anwer me. I got put in the back of the police car in handcuffs that were on extremely tight.I was crying cause I didn't understand why I was going to jail,when it should have been the other way around.I'm also incontient and while I sat in jail all night I soaked myself and had to go and get a mug shot and my fingerprints were taken,then I had to go before the Judge with myself all PEE PEE'd up,my clothes was soaked I was so embarrassed. I found out then that the police went in my house without my permission and took all my prescribed medicines and my medicine tray also.I never got back my medicine tray that had over $400.00 worth of medicine in it. So when I got out of jail I called my son and he came and finished packing for me because I wasn't in any shape to do any of it,due to my nerves were shot. So I had nowhere to go except to my Son's in Anderson,S.C. Now I don't have any place to live and no car to get around in either. So see I'm between a rock and a hard place. Deborah E.DelaneyFlag
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Name: Vivian C Bissett on Jul 7, 2011Comments: I am interested to know if this just a Charleston area inititive. I have worked hands on in the home health care field, My employment takes me in areas of the Pee Dee region & Horry County areas. I haved serviced many clients who have been greatly afeected by the rounds that have come through already & will be by those coming. I would be interested in getting some of these stories included. I would like them told. It sickens me to know just WHO is being cut. Some of these folks literally have NO ONE ELSE but their providers going in daily. Please contact me & tell me how to help them further. How to get these stories out to public where it needs to be! Thank you Vivian BissettFlag
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Name: Pvysfvje on Nov 26, 2011Comments: NGqgfb hadksagjsdnb, bjnhwdfiwhnc, jopxfgcoalht, http://uhqjktqzmhux.com/Flag
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Name:
Conny Johnson on Jan 13, 2012
Comments: I am not eligible for medicare for 2 years after 5 years of not able to work and just started receiving disability in October 2011. They wouldn't backdate it and I had 4 doctors write to disability on my behalf. I have been in a flare and in bed 90 % of my time for a month. Alone almost 24/7. I paid into this system all my life and I do not appreciate being called a person taking something for nothing either. I am not using "Entitlements" I am using insurance I paid for!!Flag -
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Name: Adobe OEM Software on Mar 9, 2012Comments: 9JHDCU Thanks for the article. Keep writing.Flag
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