From Loving Arms

From Loving Arms Georgia’s Children Living in Nursing Homes and State Hospitals Children in Nursing Homes / 1 Special thanks to the individuals and families who told their personal stories for this publication in hopes that in the future no family will have to endure the tragedy and hardships that you have endured.

The Authors:

Katie Bailey is a graduate student at the Institute on Human Development and Disability who visited the families whose stories appear in this publication. All of the stories are written according to their accounts.

“He Thought I Gave Him Up” — Al and Peggy’s Story was written by Vici Decker (staff member at IHDD) as told to her by Al Duval and Peggy Laws.

Published by: The Institute on Human Development and Disability, a University Center for Excellence in Developmental Disabilities Education, Research, and Service. IHDD is a unit of the College of Family and Consumer Sciences at The University of Georgia. 850 College Station Road, Athens GA 30602-4806 706-542-3457; Fax 706-542-4815; Website: www.ihdd.uga.edu

Pulled from Loving Arms is produced under grant #90DD0562/05 from the Administration on Developmental Disabilities, Administration on Children and Families, United States Department of Health and Human Services, to The University of Georgia, an equal opportunity employer. No state funds are used in its production, printing, or mailing. This publication is available in alternative format upon request; please contact the publisher. First Printing: August 2005.

2 / Children in Nursing Homes Contents

The Children’s Freedom Initiative Pg. 4

Happy Means Home — Don & Laurie’s Story Pg. 5

All You Need is Love — Emily, Marylin & Lorrie’s Story Pg. 8

Why Can’t They Spend a Little Money to Keep Us Together? — Maurice and Emma’s Story Pg. 13

He’s My Kid — Jason & The Jenkins’ Family Story Pg. 15

He Thought I Gave Him Up — Al & Peggy’s Story Pg. 20

If I wasn’t Christian’s Voice — Christian & Terry’s Story Pg. 22

Finding the Way Home — Chase & Lori’s Story Pg. 26

Children in Nursing Homes / 3 The Children’s Freedom Initiative: The Children’s Freedom Initiative In the spring of 2005, the Georgia General Partnering Agencies are: Assembly passed House Resolution 633. This The Governor’s Council on legislation urges the Georgia Department of Developmental Disabilities Human Resources, The Department of 888-275-4233 www.gcdd.org Community Health, the Department of Education, The Department of Labor, and the The Georgia Advocacy Office Department of Juvenile Justice to work together 404-885-1234 www.thegao.org to provide the General Assembly with a plan The Institute on Human (that can be put into effect in the next five years) Development and Disability that will provide home and community-based 706-542-8067 www.ihdd.uga.edu care for all Georgians with disabilities who have not yet reached the age of 22. The Statewide Independent Living These agencies are being asked to develop Council this plan with special consideration for the more 888-288-9780 www.silcga.org than 150 children and youth who are currently People First of Georgia living in nursing homes and state hospitals and for 404-687-8890 those who are currently on Georgia’s waiting list for disability services. The five organizations that proposed HR 633 are part of an effort known as the Children’s Freedom Initiative. This initiative was formed to make sure that children currently placed in When families struggle to meet the needs of nursing homes and institutions live in homes their children with disabilities and turn to state with permanent families and to ensure that in agencies for assistance, there must be a plan in the future no child will live in an institution. place that acknowledges the importance of The mission of the Children’s Freedom families. The priority should always be care and Initiative reflects the understanding that assistance that enables the child to grow and children belong with loving families – not in thrive in the nurturing arms of a family – either facilities. We know that, without the influence of the child’s biological family or with a loving stable and supportive family and community- adoptive or foster family. Any other alternative based supports, children often experience will compromise the child’s development and delays in physical, emotional, and social will perpetuate the idea that children with development and are at greater risk for abuse, disabilities are unwanted and not valued. and neglect. We hope that everyone who reads these The stories in this book illustrate the great stories will see that the value and the quality of harm done to children and their families when human life are not dependent upon ability but the service system’s only alternative for support upon the love and the sense of family and is institutionalization. The common thread in community that we all share. The fact that these stories is a state system that perpetuates children are living in institutions contradicts the outmoded and stereotypical views of people value that we place both upon family and upon with disabilities and the type of support that the quality of human life. they and their families need.

4 / Children in Nursing Homes Happy means Home remedies to keep him comfortable when they are there. Extended family— nieces, nephews, Most mothers have a common trait that and cousins—also visit with Don and check in bonds them to motherhood: they want the with Laurie. Laurie and her family have kept absolute best life has to offer for their children. extensive records of all Don’s hospitalizations At least that’s how Laurie Faulk feels about her and incidents. They say they have unsettling son, Don. photographs documenting neglect of Don and Don has been Laurie’s pride and joy since that his doctors have told them to take Don he was born twelve years ago in Albany, home. Georgia. “He’s my miracle,” Laurie says. “I During a recent hospitalization, Don’s mean he changed me completely,” she adds. physician instructed Laurie to take Don out of Laurie knows that she is unable to make the nursing home, as he was severely Don’s life the best it can be because he is living dehydrated and had complications due to his in a nursing home. Don has lived at Brian feeding tube being pushed too far inside his Center Nursing Home in stomach, she says. The Jeffersonville, GA, for the physician told Laurie and her past six years. Six long years family that “no nursing that Laurie has wanted him home was good for a child.” home, living with her, Laurie and her having the opportunity to family know methods of make every day the best for keeping Don’s tube area Don. clean and clear and the The holidays are dark specific creams to use on times for Laurie’s family his irritated skin, which because Don is not able to is caused by him lying in spend all day celebrating. the same place day after Her family has to take him day. They believe one back to the nursing home to hundred percent that sleep. Don’s past six Don would be healthier birthdays have been and happier living at heartbreaking because Laurie She was most proud of home with them. He just doesn’t and Don have had to celebrate Don when he said the need to be in a nursing home in the nursing home where Don words “love Mom.” anymore, Laurie’s mother, is surrounded by people who Jennifer, says. “It’s pitiful.” are six and seven times his young age. Laurie says her doctors advised her at Don’s Don spends his days lying in his bed or birth in 1993 to take him home and take care of occasionally in a Geri chair positioned along the him, that he would be a vegetable and would wall in the halls of the Brian Center. The social live to be ten years old. Don was born in a worker at the nursing home says a teacher comatose state and had brain damage from a comes for half an hour, once a week to work traumatic birth. with Don. Laurie brought her baby son home from the “He would be so much happier and would hospital and gave him the best care she could: learn so much more [at home],” Laurie’s sister, She loved him and spent time with him. She Penny, believes. recalls doing therapy with him to strengthen his Fortunately, Laurie has excellent family legs as she changed his diapers. She taught him support. Her mother, sister, and roommate visit to say words such as “mom,” “up, “good,” and Don frequently and have their own special “love.”

Children in Nursing Homes / 5 Don received early intervention services has a television and VCR his mother purchased, when he was young. Laurie took him from along with several Disney videos. The sign on Albany, Georgia, to Columbus for therapy. his door is covered with teddy bears and says When Don was four, the family moved to “The Baby’s Room.” Cochran, Georgia, and a preschool teacher came Don rarely spends time outside of his room to their home to work with him. The preschool at the nursing home, the social worker says. teacher had Don touch different surfaces to Laurie knows Don loves being outside, but does stimulate him and read to him, as did Laurie. not get the opportunity to go out at the Brian When Laurie and her husband divorced, Center. Laurie and her family take walks with and she and Don moved to Hawkinsville, Don when he visits them. Don also enjoys Georgia, he was not receiving any services or baths, Laurie says, but knows the nursing home school support. “I didn’t have money and all to bathes him in bed. get him places [for Country music is therapy],” she says. his favorite, and he I never went also likes to listen to anywhere without his Veggie Tales that baby, Laurie videos. Laurie says says, “but then I Don tries to sing messed up.” Laurie along. got into legal trouble When Don is when Don was six able to leave the years old and asked nursing home, they her ex-husband to often go to Laurie’s keep Don for awhile. mother’s home in Laurie found out Don Danville, GA for had been placed at family reunions and the Brian Center, include Don in all the “and that’s how I lost excitement. “He has him,” Laurie explains. The physician told Laurie and to be in it [activities] too , When Laurie was able to her family that “no nursing everyone else is,” Laurie visit Don months later, she home was good for a child.” says. discovered that he had been Her mother, Jennifer, taken from the nursing home says she’ll have more than to an Intensive Care Unit (ICU) in Macon, GA. fifty family members visiting at one time. Her Don was being treated for an infection in his home is on land that has been in her family for stomach. Laurie says Don had been in ICU for a decades, with plenty of room to ride go-carts while, but three days after she visited, he was and shoot fireworks, some favorite family discharged from the hospital and taken back to activities. “He’s so excited when he comes home, the Brian Center. he won’t even take a nap,” Laurie says. At the nursing home, Don’s room is the Don’s cousins entertain him and hug and most brightly decorated with butterfly mobiles kiss him when he is at his grandmother’s. His hanging from the ceiling, colorful pictures on aunt, Penny, believes, “if Don could get around, the walls, and numerous stuffed animals for he’d be a devilish little boy.” Don to cuddle. A fan is constantly blowing Laurie and her roommate, Julie, drive Don wind chimes, which Don loves to hear. to and from the Brian Center for the occasional There is a vacant bed in his room that the visits, but want Don home living with them social worker says belonged to another young boy, who is no longer at the Brian Center. Don 6 / Children in Nursing Homes permanently. Julie feels he would improve mother she wouldn’t leave Don with anyone significantly if he were living at home. anyway. Laurie and her family have noticed Don Jennifer’s concern is that “they pay all this regress during the years that he has been at the to these sorry people in nursing homes, why nursing home. She says she was most proud of can’t they help Laurie at home?” Don when he said the words “love Mom.” She Laurie says she can provide the best for says it was the best feeling, knowing that he Don, and all she wants is for him “to live the rest loved his mother. of his life happy,” she says. She knows how to “I’ve always been make him happy. proud of him,” Laurie She knows happy says. “He came from a means home. coma to saying words.” Her family talks directly to Don and knows what his facial expressions mean. She says he used to communicate more with his eyes and expressions, but still on good days, he will say the words his mother taught him. Laurie says she wants Don “to be at home where he belongs.” Jennifer claps her hands, cheering with excitement at the Laurie wants Don ”to be at thought of bringing her grandson home to Laurie’s. home where he belongs.” “He’s one of our angels,” Jennifer says, and explains that he should be living with his mother. Laurie wants to take Don back to Children’s Healthcare with doctors who work with children. Right now, he is being treated by a doctor at the Brian Center, she says. She wants him to start therapy again, and wants a school teacher to come to her home and work with Don. Laurie knows she would need supports at home, but knows her roommate and family will help as much as possible in order to get Don out of the nursing home. Jennifer says now that her grandson is older and bigger, she does not believe she would be able to handle him as she did in the past. Laurie interrupts and tells her

Children in Nursing Homes / 7 All you need is love making her feel loved. She went to visit her every week. Lorri remembers that Emily spent her first birthday, January 28, 2001, inside the Six-month -old, brown-eyed, dark-haired, nursing home and she knew Emily did not need Emily (not her real name) was found all alone in a to be at Central State. She needed a home and hospital in Macon, Georgia, five years ago. family. Doctors said that she had “shaken baby Meanwhile in Vienna, Georgia, Marilyn syndrome,” which resulted in brain damage, Allen was working as a caregiver at an Easter blindness, and seizures. Lorri Fischer, an Seals Group Home. Easter Seals provides “ordinary” citizen met Emily after talking with support and services to people with disabilities. the coordinator of Macon-Bibb Citizen Easter Seals asked Marilyn about having Emily Advocacy. She became Emily’s citizen advocate come live with her, but Marilyn declined and started visiting her at the hospital. A citizen because she had just lost her husband in a truck advocate is a volunteer involved with a person accident. with a disability who looks out for his/her best DFCS was trying to reunite Emily with her interest, Lorri explains. mother, Lorri says. Emily’s mother had been Before being admitted visiting Emily at Central State to the hospital, Emily had and had almost completed her been living with her uncles case plan when she tested because her mother and positive for drug use. The grandmother were in jail. reunification with the birth She stayed six months at family was no longer an The Medical Center of option, Lorri recalls. Central Georgia in Macon. Lorri had completed the The Department of Family Model Approach to and Children Services Partnership Parenting (MAPP) (DFCS) gained custody and training through DFCS, with transferred Emily from the the hope that Emily might hospital to the Nursing come live with her. But, since Home Center at Central Lorri had been informed that State Hospital in Emily was going home to her Milledgeville, GA. birth mother, she had already Lorri went through a agreed to be a foster parent for long process to gain access another child. Unfortunately, to visit Emily at Central she knew she couldn’t take State and was constantly both children; “Emily comes questioned about her “Emily” first,” Lorri said at the time. interest in Emily. “They Marilyn, in Vienna, kept [DFCS representatives, Central State officials] hearing about the little girl stuck at Central State had me jumping through hoops and I jumped in a nursing home and finally went to see her. through every one of them and they still Marilyn had been in contact with DFCS and was couldn’t understand why I wanted to see this discouraged about Emily; she was told that child,” she says. Emily would have a short lifespan, never say ‘I Lorri wanted to be able to visit Emily and love you,’ and that she was of a different race. look after her from outside Central State. Emily While DFCS was trying to discourage Marilyn, was usually in an iron crib and Lorri wanted to Easter Seals was positive that Marilyn could give her individual attention and hold her, welcome Emily at her home.

8 / Children in Nursing Homes Marilyn says the first time she visited Their typical day begins between 5 and 7 Emily in October of 2001, she checked under her a.m., when Emily wakes up and has her first clothes to see if the warnings from DFCS were feeding, says Marilyn. Then, its fall back to real. “All I saw was a G-tube [feeding tube]. All sleep until 10 or 11, and then its bath time to get the things DFCS told me were not true,” she ready for the day. says. Marilyn’s routine for getting Emily dressed “It was awful. To me it was awful just and ready involves lying her across her lap on because of her surroundings,” Marilyn says the sofa. “I’m running out of lap,” she says, as remembering seeing Emily for the first time. “I Emily is barely able to lie across Marilyn’s lap know people worked as hard as they could,” she now because of her height. But she stays there says, but she knew no baby needed to be in a while Marilyn applies lotion, dresses her, and nursing home. “It broke my heart,” she adds. braids her long, dark hair. “We’ve come a long Marilyn knew from that first visit that she way in three years,” Marilyn says. “She used to had to bring Emily home. With the help of be tender-headed,” she adds, while she parts Easter Seals, Marilyn began the demanding Emily’s hair into four braids. process of getting ready to bring her home. Every day Emily is dressed in matching She continued visiting outfits, including socks, Emily two times a week to shoes, and hair bows. show the nurses at Central “She has a wardrobe out State that she knew how to of this world,” Marilyn care for her. Marilyn says, and admits she is remembers going through always buying clothes a criminal background and accessories for her. check, finger printing, a The two of them even physical, and a coordinate their colors psychological evaluation. for church service on She had to get statements Sundays. from her physicians, “When she first documenting that her came home, you’d health was good enough to touch her and she’d care for Emily, and she had snatch away, draw up,” to have her house Going Home: Marilyn and Emily leaving Marilyn says. Now inspected. She completed Central State January 14, 2002 Emily has found her place the MAPP training through in Marilyn’s arms, side DFCS as well. by side in the recliner, along with their dog, “If I wasn’t dedicated, the process would Chelsea. Marilyn was afraid Chelsea would be have run me away, but I wanted this little girl,” jealous of Emily, so in the beginning, she placed she says. Finally, on January 14, 2002, after a Emily on a quilt on the floor and let Chelsea get year of living at Central State, Emily came home to know her. Now, Chelsea is protective of with Marilyn. Emily and has even nipped therapists who work “And we’ve been here ever since,” Marilyn strenuously with her. says, and “without any health problems,” she Over the years, Marilyn has maintained a adds. Nurses came by their home every day, as relationship with Emily’s birth mother, against well as DFCS workers, and Children Medical DFCS’s advice. They previously had visitations Services workers. “After the first year, when at the DFCS office, and now Marilyn stays in everybody saw everything was great, they quit phone contact with her at least two times a coming as much,” Marilyn says. month. “I was kind to her. Thing was, I had

Children in Nursing Homes / 9 Emily,” Marilyn says. “Emily was in a safe place. was having 25 to 30 seizures a day, Marilyn There wasn’t any reason for me to jump on her recalls. “She used to scare me to death,” and beat her down.” Marilyn says, but they adjusted her medicines. Emily’s biological family lives in a Now, Emily has one or two quick seizures per neighboring town, and Marilyn says as long as day. they respect her relationship with Emily, they are Marilyn delightfully remembers the first welcome to visit. Emily’s birth mom sends her time Emily ate baby food. “Apricots,” she says, presents on her birthday and sends Marilyn “I’ll never forget that jar of apricots.” And now Mother’s Day cards. Emily, who eats two jars of food per day, is even Easter Seals helped obtain court-ordered spitting out green vegetables, a sign of placement for Emily in Marilyn’s home, which is improvement, indicating that she knows she permanent now. Marilyn is thrilled she doesn’t doesn’t like green veggies, Marilyn says. “I am have to worry about Emily ever leaving. She just constantly amazed by this little girl,” she hasn’t formally adopted her, because she says it says. would make it harder for both of them. Right But now she’s beginning to worry about her now, Marilyn is employed as Emily’s care-taker starting school full time in the fall. Emily by Easter Seals; attended half-day however, if Marilyn programs for pre- adopted Emily, she school, but in the fall would have to get a she will attend school job outside of their all day at JS Pate home and Emily Elementary School in would require other Cordele. “I don’t know support. how I’m going to get It is an ideal through it,” Marilyn situation, Marilyn says, fearful of her little says. Through girl being gone all day. Emily’s Katie Beckett “It’s just been us for Waiver and Marilyn’s three years now, and job with Easter Seals, now they want me to they’ve had share my baby.” everything they’ve Emily rode the needed. And they school bus to her pre- have family support, school, so she is too. Marilyn’s three accustomed to that, but sisters live in the A happy family: Marilyn, Emily, it’ll be interesting to see neighborhood, with and Chelsea in their home. for whom the their families, and separation is more everyone looks after Emily. “That little girl really difficult: Marilyn or Emily. At least Emily is in a gets around,” Marilyn says. home in a community where she is able to ride It’s a world of difference from living in the the bus to school. nursing home at Central State. “I believe if she Marilyn met with the teachers for Emily’s had stayed there, she would have died,” Marilyn Individualized Education Plan (IEP) and they says. “It’s so much different on an individual set up physical therapy and music appreciation basis,” she adds. during the school day. Emily loves music, Marilyn is so proud that Emily beat the Marilyn says, so she will enjoy that. Marilyn odds, she says. When Emily first came home, she

10 / Children in Nursing Homes usually has music playing all the time in their says. “Second,” she says, “pray a lot for home. strength, patience and endurance.” Marilyn says she told Emily’s teachers she’ll “And third, just have so much love in your try to stay away, but “I have to keep an eye on heart…overflowing,” Marilyn says. “Don’t her,” she says. She promised the teachers that think about what you’re going to get. Think she would visit Emily at school only once or about what you’ll give and you’ll get it back.” twice a week for the first month or two. She’s convinced. When Emily was in pre-school, one of her teachers made Marilyn a Mother’s Day card, which is now framed in their living room. “I just had to let everyone see it,” she says. She carried the card everywhere she went — to the Emily’s real name and identity have been shielded bank, the post office, DFCS office — for reasons of confidentiality. everywhere, she says. They even made a copy of it at the Easter Seals office. “I’d just break down and cry. That meant so much to me,” she says. She wrote a letter to the editor of the newspaper talking about her Mother’s Day card and how proud she was to receive it. “It’s funny when you get kids,” Marilyn says. Before having Emily, she was known as Marilyn. Now, she’s known as Emily’s mom. She wouldn’t change it. “We bless each other,” Marilyn says. “It’s not what I do for her. It’s what we do for each other,” she adds. Another letter Marilyn wrote to the editor reads: “Before I ever saw her, I was told all that she would never be able to do. But my faith led me to her side and as soon as I saw her I was lost. I have had no regrets, because despite her medical and developmental problems, she blesses me because she lives. She reaffirms my faith in God and makes me more than I am.” Lorri Fischer says of Marilyn: “You can hear the love in her voice when she talks about Emily.” It all worked out, Lorri says. “I don’t have to worry about Emily.” And if Marilyn ever needs us, we will be there for her and Emily in a heartbeat, she says. Marilyn knows there are over a hundred other children in nursing homes and institutions in Georgia, and she knows that they all need homes and families. To those chosen, special people who are considering bringing children home, Marilyn advises that, “First, you have to be true to yourself. Know what you can handle and know the extent you’re willing to go,” she

Children in Nursing Homes / 11 Why can’t they spend a little he received medication for the seizures. The medication worked against his behavior, Emma money to keep us together? believes, causing the school to place him in behavior and special education classes, where Maurice Walker is 19 years old and he has his behavior worsened. been institutionalized for more than a third of Maurice has been in “the system” since he his young life. was seven years old, but his grandmother wants His grandmother, Emma James, is his nothing more than for him to live with her biggest champion in the outside world. She permanently. She says she has found it difficult feels that Maurice is caught in a system that she to make others understand that she wants him can’t understand. He is “a forgotten case,” she at home. Maurice lived at a residential says. Emma is afraid that Maurice has simply treatment center for youth and adolescents who has been “let go” by society. have behavioral and emotional issues, from the Every week, Emma cooks and packs meals age of eleven to fourteen. He was readmitted and carries the food across the street from her when he was fifteen. During his stays at Laurel house in Milledgeville to Central State Hospital, Heights, Maurice did not attend public school, where Maurice lives. It is only a short distance, and he only had weekend passes to visit his but it may as well be a country away. That’s grandmother’s home. how far it feels. Since Laurel Heights Hospital serves Maurice was taken to Central State Hospital individuals under eighteen, on his eighteenth when he was 18. There, he spends part of his birthday, Maurice was discharged and day at the Education Work Activity Center. And transferred to Georgia Regional Hospital, he dreams the dreams of every 19-year-old: A despite Emma’s request that he come home to job, a girlfriend, or girlfriends; his family, live with her. The Department of Family and especially his grandmother. A life worth living. Children Services (DFCS) and the staff at Laurel He also talks about education, finishing high Heights were “adamant that he was not coming school so that he is ready for a job. Maurice has home,” she says. “It looks like the system not been in a typical public education classroom doesn’t keep families together, they separate since he was institutionalized. them,” Emma says. Maurice and his brothers and sister were Georgia Regional Hospital was deemed an removed from their mother’s home because of inappropriate placement for Maurice since he abuse and neglect when he was just a year old. was not in need of mental health services, and Maurice then lived with his maternal he was transferred to Central State Hospital in grandmother, Emma James, who says that she Milledgeville in October of 2004. The Regional has always had plenty of room for her Board intended to place Maurice at Central State grandchildren to live at her house. In her home, Hospital, then discharge him with a Medicaid there are many photographs of the children waiver for a bed in a group home setting that growing up, which show how involved she is in the board believed was available. That plan fell her grandchildren’s lives. apart when the waiver had already been taken. When Maurice was five months old, he was Emma was present at Maurice’s admission to left unattended in a vehicle, an experience that Central State Hospital, although neither she nor Emma feels is to blame for Maurice’s grand mal Maurice was given the opportunity to express seizures, as they began approximately one year their thoughts. Maurice is no longer under the after the incident. Once Maurice entered public custody of DFCS, but Baldwin County DFCS is school in Baldwin County, school officials attempting to gain adult guardianship, even thought he had a behavior problem and sent though Emma wants to be Maurice’s guardian. him to the Medical College in Augusta, where During the Central State admission, the judge

12 / Children in Nursing Homes mandated that Maurice stay for at least six “Hopefully selling cars,” he says, smiling months to get his anger under control. Emma while thinking about driving and preparing cars says she doesn’t understand why he is for sale. “Fast cars,” he adds, but then changes institutionalized. his thought process and mentions finishing his “Maurice doesn’t do anything when he’s education first. Upon admission to Central State here [visiting home] except play games and we Hospital, Maurice and his grandmother were have family cookouts. He’s no threat to the told he was not “appropriate for public school.” community,” Emma says. Maurice’s social Maurice says that he wants to go back to worker at Central State Hospital agrees. If the “regular high school for 12th grade.” correct supports were in place, Maurice would be an Eventually, Maurice wants his own home, excellent candidate for community living, his social which he knows is feasible with the right worker says. supports. He says he would need some help Emma is frustrated that her grandson has cooking, but does know how to prepare simple not been allowed to visit meals. Maurice says home during his stay at that he would not need Central State, especially any help cleaning, but since her home is across the that medication street from the hospital’s management and money campus. “He’s an adult” she management — paying says. “He has a right to bills and budgeting— voice his opinion” about are areas in which he visiting home or making would need assistance. other decisions. Maurice dreams of Maurice says he wants to getting his driver’s move back to his license and driving grandmother’s house, a himself to and from place he considers ‘home’ school and a job. He after the transfers to and says that if he were from various hospital living in the community, settings. He also mentions he would “spend time his father and step-mother with his girlfriends, who live near his dad, brothers, mom, grandmother, as additional uncle, and support systems, but Emma Maurice reads from an encyclopedia grandmother.” He remains his biggest at the Education Work Activity wants to go shopping, supporter and advocate. Center at Central State, where he to the movies, and to eat Maurice’s mother (Emma’s out occasionally. daughter) wants what is best spends his weekdays. He enjoys Maurice wants to be for Maurice and agrees that reading he says, and wants to learn to able to make his own he should live with Emma. read better in “real school.” decisions about with Maurice says he would live whom he shares his with his father and step-mother if he could not time, and he wants free reign over his daily live with his grandmother, but Emma and the activities. home where he grew up is his first preference. Emma wants the best for her grandson and Maurice realizes that he would need to get a knows he would need resources to live in the job if he lived in the community. community. “I would want to see Maurice, since he wants it so bad, to get that high school

Children in Nursing Homes / 13 diploma, get a job, and take care of himself,” his spirit.” She pauses for a long minute, and Emma says. “Eventually, I want him to have a then says, “I’d hate to see his spirit broken.” family of his own,” she adds. She suggests he Emma is aware that the State pays for receive job-training and says that he would need Maurice to live in an institution, even though “somewhere to go during the day since I work.” she is willing to provide for him at home. She “You never know what a person can do until sums it up with the question that she wrestles he’s given a chance. Maurice is not being given with everyday: “They’ll spend $350 a day to a chance,” Emma says, expressing her keep a family apart. Why can’t they spend a frustration. She feels people are not listening to little money to keep us together?” Maurice’s wishes and she says she knows her grandson better than anyone. “It’s sad. Maurice is the one that got thrown away,” Emma adds. Emma blames Maurice’s transition to several hospitals, instead of into the community, on the lack of preparation by the agencies involved in his case. “They weren’t working on Maurice’s case in advance,” she says, and on his 18th birthday, he had to be discharged from Laurel Heights Hospital immediately. “They didn’t prepare,” Emma says. “Just a forgotten case. He was let go,” she adds. Emma gave the example of a family preparing to send their child to summer camp, and how the family begins registering the child several months before summer arrives. She believes that his caseworkers should have been planning for Maurice’s discharge since they knew he was going to turn 18 and would be required to leave Laurel Heights. “I hope everything works out for Maurice. I’m hoping and praying,” Emma says. “I want him out. He shouldn’t have been in in the first place, not out there [Central State Hospital].” Maurice’s discharge plan on record at Central State indicates that the “treatment team agrees that with the appropriate supports in place, Mr. Walker would be an ideal candidate for community placement,” but that “the supports he needs to live safely in a community setting are not currently available.” His social worker believes Maurice would benefit from a vocational program, a job, and a job coach. Emma, who describes her grandson as mild- tempered and funny, is concerned that Maurice’s behavior will decline the longer he lives in an institution. But, she says, “It takes a lot to break

14 / Children in Nursing Homes He’s my kid stayed for 48 days. He received a gastronomy tube for feeding and underwent numerous tests. Meet the Jenkins family: Frank, Cindi, “We were told he had severe brain damage and and their two daughters, Jené,19, and Jayme, 12. that he would never be anything more than a They live in Harlem, GA, with their three cats vegetable. We should consider putting him in an and two dogs. institution,” Cindi remembers. But they didn’t. Frank drives trucks currently, but served in Not then. the Army before moving to Georgia in 1995. Cindi and Frank say caring for Jason was Cindi works at JC Penney in Augusta. Jené is rough at first, but they developed patience and a engaged to be married, routine and they while Jayme makes the worked together. honor roll at her middle Cindi says that school. when Frank was Life seems ordinary at his wit’s end, for this family; however, a she would be big part is missing, as calm and vice they will tell you. Cindi versa. Though will say it’s her heart that Cindi says Jason is missing. has always been a Jason, their first-born “daddy’s boy,” and the girls’ older and the rest of the brother, lives thirty family agrees. minutes away from his When her first family at East Central daughter was Regional Hospital on the born, Jason would Gracewood Campus. try to keep his Jason, who is 23, has lived sister from getting at Gracewood for the past their Dad’s nine years. Cindi and Frank with their son, Jason. “God attention, Cindi Cindi recalls Jason’s says. placement as the hardest gave us this boy,” Cindi says, her eyes filling Jené doesn’t day of her life. Her with tears. “[It] hurts me that we’re not the seem to mind at daughters, four and ten ones that get to care for him.” this point. She years old at the time, says she wants to “cried and asked me why get her brother I gave their brother out of Gracewood, and promises to take care of away,” Cindi says, beginning to cry herself. “If him if something happens to their parents. we’d been able to get some kind of respite, we’d “Both of my girls have big hearts,” Cindi says, never have taken him [to Gracewood],” she and she believes it comes from having a brother emphasizes. like Jason. Or maybe it comes from having such Jason, who the family has nicknamed a loving, supportive family. “Bubba,” had a traumatic birth that required an Jené remembers having a baby doll when emergency caesarean section. “The cord had she was younger that had a feeding tube in its prolapsed and Jason was coming breech so he stomach. Frank says he had to cut a hole in the came down on top of the cord with his feet doll’s stomach for Jené, so her doll would be like cutting the oxygen off,” Cindi says. her brother. Jason was flown to a hospital two hours from where Frank and Cindi were stationed and Children in Nursing Homes / 15 The Jenkins moved to Hawaii in 1988 where her on top of him, which frightened Jason. He Frank was stationed for four years. Cindi says threw up his knee to protect himself, which Hawaii was the best place for Jason to live. connected with his mother’s face and eye, “There the special education was top-notch and resulting in a large bruise. we met a dedicated teacher. Between our Frank and Cindi were afraid Jason might continuous persistence and hers, Jason began to unintentionally hurt their daughters and they walk. He was nine years old,” Cindi says. were unable to locate any in-home support. “If After Hawaii, the family moved to we would have had any kind of help, we would Oklahoma, and Jason received therapy services have never put him in placement [Gracewood]” there, too. Once Frank left the Army and moved Cindi says. But, “things were getting so to Georgia, Jason was approaching puberty and increasingly hard,” she recalls and they were life for the family turned upside down. told to put Jason in “temporary and immediate “When he hit puberty, he all of a sudden care at Gracewood.” got so violent.” Cindi says. “He would fight Temporary turned into weeks and weeks when I was trying to into months, then months into put him in his years. Before we knew it, it wheelchair for school. had been nine years, Cindi He started being Jason’s temporary says. aggressive towards placement in Gracewood The family brings Jason others. He would pull home on the weekends when hair or tear clothing,” turned into weeks and they can, but it is very she adds. weeks into months, then exhausting having him at They needed help months into years. Before home, they say. “He’s in and they weren’t constant motion when he’s getting any. Respite we knew it, it had been here. We’re worn out after the care to support the nine years, Cindi says. weekend,” Cindi says. family was not When they take Jason back available, and it was to Gracewood at the end of the getting harder to keep weekend, he will lock his feet up with Jason’s supplies. They received $300 to under the dashboard of the car so he will not be $400 a month from Supplemental Security able to get out. “He doesn’t want to be there. Income, but were spending $100 a week for his It’s killing me that I’m the one doing it,” Cindi diapers. says. “I think it has a lot to do with him being Frank’s uncle had told them about unhappy in his environment,” Frank adds. Gracewood, located near Augusta, and “Going back, looking back…even if I went suggested they put Jason there. “We said never. insane I wouldn’t do it again,” Cindi says, referring But that day Jason grabbed me, never came. I to placing Jason at Gracewood. was scared that if that had been our youngest The family has battled with Gracewood over child he had grabbed that he would have broken the years regarding bruises on Jason and the bones in her face. I took Jason to Gracewood. It policies used to approach and suppress Jason, was the hardest thing I have ever done in my which further antagonizes him, Frank says. “It’s life,” Cindi says. “I cried the whole time I was frustrating,” he adds. Frank disagrees with there and all the way home.” Gracewood’s policies for handling clients which, Jason had become strong enough to “are set in stone,” he says. “Grabbing Jason in overpower his mom. The wake-up call for Cindi the same spots bruises him,” his dad has noticed and Frank occurred when Cindi was changing over the years. Jason and Jason grabbed Cindi’s hair, pulling

16 / Children in Nursing Homes “We’re so involved in our son and yet they his room, in constant motion from the air make no attempt to pick our brain for conditioner vent. suggestions to deal with him,” Frank says. Currently, Jason’s family is focusing on his The family plays an active role in Jason’s life interests and what it would take for him to leave at Gracewood and want what is best for him. Gracewood and live in the community. As They know that he loves water and advocate much as they would love to have him at home, that he goes swimming at the facility. they know their house is too small and it would They have a pool at home, and when Jason not be feasible for Jason and the support that he comes to visit, Jason gets his swimming trunks would require. Frank dreams of building a and suntan lotion, as indication that he wants to bigger home with a soundproof room for Jason, be in the pool. so he can watch television in the middle of the Jason also loves night if he music which is wants. constantly playing in Jason his room at cannot live in a Gracewood. He group home especially loves setting because country and he is fed through Christian, his family a tube, which by says, and enjoys policy, requires watching music that a nurse videos. The family administer his has a trampoline, feedings. Frank and Jason likes lying thinks that this on it while someone is ridiculous, jumps around him to because Jason’s bounce him in the sisters could air. feed Jason when Jayme, Jason’s Jason likes his mother’s car: a blue Mustang. they were in youngest sister, says He will sit in it for hours. “He loves to go; he elementary Jason loves go-carts, loves speed.” school, he says. too. They’ve been to Right now, Funville and ridden the family is go-carts around the focusing efforts track. “He likes moving,” Jayme says, adding on developing a Microboard, with the help of that he loves hammocks and rocking chairs. Ruthie-Marie Beckworth, from Tennessee “He loves to go; he loves speed,” Cindi adds. (www.tnmicroboards.org). Ruthie is a PATH Jason has taken a special liking to his facilitator, which stands for “Planning mother’s car: a blue Mustang. He will sit in it Alternative Tomorrows with Hope.” She has for hours and roll the windows up and down, helped families in Tennessee develop change the radio stations, and lock the doors to Microboards and create homes in the keep his family from getting him out of the car. community and support for a family member He knows what he’s doing. “He’s so much with a disability. smarter than he wants you to know,” Jené says. Recently, Jason’s family met with Ruthie Lights and lava lamps, colorful attractions and her husband, Mark, as well as with with movement, interest Jason, too. Wind members of their church and community to chimes and ornaments hang from the ceiling of discuss the possibility of Jason living in the

Children in Nursing Homes / 17 community. They discussed Jason’s interests for the last nine years having to leave him to the and needs and what it would take to get him out care of others. “He’s my kid…God gave us this of Gracewood. “I’m excited. I’m thrilled,” boy,” she says, her eyes filling with tears. “[It] Frank said at the meeting. “Let’s get started. hurts me that we’re not the ones that get to care Jason deserves it.” The group plans to continue for him,” she adds. meeting until it discovers a solution to help She tries to describe the pain she feels Jason in the community. knowing that they were not able to care for their Jason’s family knows he needs 24-hour son all these years. “It’s horrible that we were support, and they know that with a Medicaid unable to get support from the system that waiver, it is feasible. would enable us to give Frank says they are that care,” Cindi says. very excited about the The family knows PATH option. It is past time for Jason to they must have support Through the leave Gracewood and to have from the State to help Microboard Ruthie Jason live in the presented, Jason’s a better life, surrounded by community. It’s past time family and people who love him. for Jason to leave community Gracewood and have a supporters would life worth living, develop a non-profit organization that would surrounded by people that love and support run Jason’s support outside of Gracewood. The him, his family says. Frank feels that if the state Microboard would manage Jason’s caregivers, could provide his family with the funds they which appeals to them, Frank says. provide Gracewood, he could give Jason a much Cindi wants more than anything to be the better life in a much better home environment. one in control of Jason’s care and has felt a loss It’s time, they say.

Jason’s PATH shows what Jason and his family and friends want for his life in the community.

18 / Children in Nursing Homes He Thought I Gave Him Up Allen’s parents did not know what to do. Peggy didn’t really understand what was going Peggy was only 15 years-old in 1974 when on; she just knew that Allen needed care. We her first baby, Toney Allen Duvall, was born. didn’t have any money, says Peggy, “and no Her newborn son appeared beautiful and insurance or social security for him or anything, healthy and no one suspected that anything was but, they told us that they knew a place that wrong until they noticed that little Allen didn’t would take Allen anyway. So they sent him cry when they stuck him with the needles for his there and after he went to that place, they got blood test. He didn’t seem to notice the pain at him a social security check to pay for all. Still, no one seemed to know just what was everything.” wrong. “They didn’t really talk to me about it,” Peggy did not know it then, but once they sent recalls Peggy. She just Allen to that facility she would knows that her son was never be able to control Allen’s sent to Grady Hospital in care again. She would always Atlanta for tests and she be on the outside looking in. was not able to take him The staff at the new home until a week later. facility tried their best to At first the baby physically and emotionally seemed to do fine, separate Peggy from her although Peggy noticed young son. Every time that that she had to tip his chin Peggy would go to see her up a little so that he would baby, the staff would tell suck on the bottle. But her that he would not live soon, he was eating less much longer because babies and less and after about with Allen’s disability did two weeks Peggy was Allen at 3 months-old not live very long. “They afraid that he was not told me he wouldn’t live to be getting nearly enough to two-years-old, but he did. And eat. She took him to the pediatrician again and then they told me he wouldn’t live to be three-years- again and each time the doctor would tell her old. They kept telling me he would die until I finally that her baby was okay, until one day, the doctor said, ‘don’t tell me that no more!’” looked at Allen and told Peggy that she needed When he was two years old, Allen was to take him to the hospital “right now.” Then, moved to the Georgia Retardation Center in says Peggy, “once he got to the hospital, they Chamblee (the name of the facility was later had all those tubes in him and he just went changed to Brook Run). “In a way,” remembers downhill from there on.” Peggy, “I was grateful that they were there – but The baby was in the hospital for a month I think he could have been better taken care of.” and still no one seemed to know just what was In fact, Al experienced a number of very serious wrong or how to help him. “It was really rough. injuries while he was a child in Brook Run. Allen still couldn’t eat and he would get “They said he used to sit in his crib and hit dehydrated. The doctors told us different things his head on the wall,” Peggy says, ‘because and everywhere we turned nobody seemed to nobody was paying any attention to him – and it want to help.” Finally, a doctor told Peggy that didn’t hurt (because Al did not feel pain like Al had a birth defect as a result of the Rubella other children), so he didn’t stop.” Allen’s face virus that she had contracted when she was was so damaged by repeated impact with the pregnant. He told her that she would not be able wall that he would need reconstructive surgery to care for her baby and that she would need to to rebuild his nose. find a facility that would care for him. Children in Nursing Homes / 19 While Allen was still a small boy, he broke One day, in 1998, (nineteen years after Allen his arm, but again, because he did not feel pain was placed at Brook Run) he called his mother like other children, he didn’t react the way other to tell her that they were closing Brook Run. children would. The staff at Brook Run did not “We wanted him to come home with us,” said realize that his arm was broken for several Peggy, “and we asked for that. But they told us weeks. By that time a lot of damage had that we couldn’t afford to give him the care that occurred. Allen’s arm had to be re-broken and he needs. I asked, ‘If you will pay people to take reset and he lost some of his fingers to gangrene. care of him there, why won’t you pay me so I When Allen was five or six his mother can afford to stay home and take care of him?’ noticed that one of his hands was swollen and They told me that it was the system. Allen blistered when she knew he had been fine only couldn’t come and live at home because that’s not the days before. “They told me that he had put his way the system works. They’ll pay those people but hand in boiling water, and I said, how? He they won’t pay me.” doesn’t even know how to turn on the water!” After Brook Run closed, Allen went to live There was an investigation, but no abuse or in a group home. Today, Al (as he is known by neglect on the part of the staff was ever proven. his friends) is 35 years old and lives and works “He used to cry a lot,” Peggy says, “because he in his own community. “I live in a normal just didn’t know what else to do and I know that setting now,” he says, “I have a regular job.” Al they used to restrain him by sitting on him.” would like everyone to see him as just a regular In spite of all the dire predictions and the guy, but his nineteen years at Brook Run left him terrible injuries he sustained at Brook Run, with a lot of scars and bad memories. Still, he’s a Allen survived. When he was old enough to positive person and he tries to think about the begin to understand what was happening to good things including his Mom and the rest of him, he became a very determined youngster – his family. Al understands better than anyone determined to make other people see him as just how important it is to have a family that cares a regular kid. “When Allen was nine or ten about you. years-old,” says Peggy, “He was using a “I was lucky enough to know my mother wheelchair for little while and I wanted to get a when I was in Brook Run,” says Al, “I wasn’t handicapped sticker for the car so it would be just left there. I stayed in contact with my family. easier for him. But Allen wouldn’t hear of it. He I was lucky. Not everyone at Brook Run was said, “No, Mom. We don’t need to park that able to stay connected to their families. I think close, I can walk.” only about 20% of us were able to do that. A lot There are only two things that Allen of the children that I grew up with went through remembers looking forward to when he lived at some terrible times. They were lonely and withdrawn Brook Run and those were the two things that from everyone. They were isolated. Some of them would get him away from the institution – going talked to themselves a lot. I think that if more of the to school and visiting his mother and family children [at Brook Run] had had contact with their every month. Allen went to a number of schools families they would have learned to interact with while he lived at Brook Run and when Al was other people more and they wouldn’t have been so ready for high School, the staff at Brook Run unhappy. Lots of them never smiled.” transported him to public school in Gwinnett Al didn’t always have this perspective on County every day. Still, he knew that they were what happened to him. “When I was little,” he underestimating what he could do and he was said, “I didn’t understand why I had to stay in determined to show them. “I went to a regular Brook Run. I wondered why me? Where was my school outside of the institution,” says Allen, normal life?” Peggy says, “Allen thought that I “and I graduated with my regular class,” (he gave him up. And he would ask me why I smiles) “I guess that’s was when the State would do that.” decided to let me go.” 20 / Children in Nursing Homes Later, Peggy tried to explain it all to him. the Institute on Human Development and “When I was older,” said Al, “my mother told Disability at the University of Georgia, speaking me that, as a baby, I had trouble eating and to undergraduate and graduate students about sucking from a bottle. I wasn’t getting enough to his first hand knowledge of institutionalization. eat. Doctor’s told my mother that I might die. I Al believes that all institutions should be closed. did almost die – twice. Mother went to different “I advocate for others so that they can get out doctors and hospitals, they didn’t understand and so some people don’t have to go through what was wrong with me and they didn’t help the same thing I did.” me. They told my mother that I would probably Al wants everyone to understand the affect die. They told my mother that the Georgia GRC that institutionalization has on children and (Brook Run) was the only place that could help adults. He hopes that talking about his me, so she had to take me there.” experiences will help him to deal with his own While Al was able bad memories while to stay connected to it helps to get other his mother, it was children and adults harder for the rest of out of institutions. the family. “My mother “After I got out of came to visit me in Brook Brook Run, I had to Run, says Al, “but my go through a lot of Dad never did. I think he counseling to help me was too scared. He with those bad didn’t know what to memories. It helped expect. Maybe Brook me a lot but it was Run reminded him of painful. Telling my Vietnam because so story helps me a lot.” many bad things When I first got happened there and so out, I didn’t have many people died. anybody I could talk Brook Run was like to about it and I was that too. Brook Run Al works as a speaker and an advocate for still scared. I thought was kind of like a UGA - here Al visits with Vince Dooley. that if I talked about prison to me. People it, people would got sick and they waited too long to help them think that I was lying about what happened to and they died. People have flashbacks from me and other children in Brook Run. But now, I being in institutions.” can tell my story and its helps me and it helps Al knows about flashbacks. “I get scared other people, because I can tell people how sometimes, I have nightmares that I do important it is that children have their parents something wrong and they send me back– but close to them to help them as they progress in then I remember that Brook Run is closed and life. I love being an advocate.” they can’t send me back there.” But Al Al knows now that his mother never wanted understands that there are other facilities – to be separated from him but they both still hospitals and nursing homes – that still grieve about the time that they were forced to incarcerate children and adults and he will not live apart. A childhood is something that cannot allow Brook Run or any other institution to be replaced. Peggy’s advice to parents who are faced haunt him without fighting back with the possibility of institutionalization for their That is why Al is an advocate in the child is: “Find another way - find a way to keep your disability rights movement. He speaks at child at home.” conferences and has worked as a consultant for Children in Nursing Homes / 21 If I wasn’t Christian’s voice… frustration, Terry says, explaining how Christian’s been known to ram it into doorways Behind a large drum set, complete with a and furniture. snare, tom-tom, bass, and cymbals, sits Christian Christian is constantly on the move during Langley. He’s happily pounding away with his the day. He loves being outside and enjoys drumsticks making thunderous sounds. He swimming in the pool with his floats. He rides hops up to shake hands and then heads toward the four-wheeler around the neighborhood with his computer in the corner of the playroom. his mom and goes camping at Lake Oconee. If Christian is a nine-year-old boy who Christian could be anywhere, he would be on a captures the attention of everyone who meets boat, Terry says. “He loves to sit behind the him. Despite his young age and the high wheel of a boat,” she says. number of surgeries he’s been through (89), “I don’t want to downplay how medically “Christian loves fragile he is,” life so much,” his Terry says, but mom, Terry “he’s not tied Langley, says. down to an area. After Christian We allow him has had enough of flexibility, the computer, he choices.” heads toward the Christian living room and receives breathing hops on his John treatments every Deere motorized four hours, and his truck. Christian’s mom or nurse will nurse attaches the set up the bag connected to treatment his feeding tube to wherever the back of his Christian is at the truck so he can time. They do travel without the treatments outside wires getting Christian is constantly on the move! or in the car when tangled under the traveling. “I moving tires. Maneuvering around his house is believe the reason not an easy task with the rugs, carpet, furniture, Christian is so well is because I give him a and décor acting as obstacles to the driver; normal life,” Terry explains. however, Christian knows exactly what to do if Christian requires a ventilator at night, and he runs into something. He simply puts his his mom says he associates the ventilator with truck in reverse, backs up, and heads a different being in bed. If he’s sick, he knows to rest and way. He zooms around the living room and into stay on the vent in bed. “We’re fortunate the kitchen, dodging stools, cabinets, and chairs. enough,” Terry says. “He has strength enough Terry says the John Deere truck was his best during the day that he doesn’t need the vent, Christmas present ever and gives him more only at night.” Most people who use ventilators independence. He loves riding around, inside use them constantly and give into the support, and outside, and Terry says it has taught him but Terry says she has never treated Christian as how to problem solve. He knows how to steer fragile and has given him normalcy. “Because of and the objective of forward and reverse. He’s that, I really believe Christian’s will defies even learned to use the truck to express statistics,” she says.

22 / Children in Nursing Homes When Christian was born, his neck was Terry feels that he would not be alive if she broken at delivery, and Terry says the doctors had placed him in an institution. “I can’t fathom gave her a long list of what was wrong with her how much we’ve identified that keeps him alive baby. Terry, a nurse, says she could not see and gives him a better quality of life…he would herself quitting her job, and she did not have have died in an institution,” she says. family nearby to help her with the new baby. Terry has researched her son’s rare She was presented with the option of giving her condition, OPITZFG Syndrome, and taken him son up for institutionalized care. to the doctor in Salt Lake City who identified the “I probably would have let the system take syndrome. To be diagnosed with OPTIZFG, a over if I’d never laid eyes on him,” Terry says. person has to have six or more characteristics, But she did. Prepared with the doctors’ and Christian has 72, Terry says. She has also warnings of how different he looked, she held found other specialists and has driven Christian her new son. “Yes, he was different,” she says, to various parts of the country for treatment. “but he was my different child. To me, he was Terry says that she knew her rights as a beautiful; he was so sweet. The minute I held parent and Christian’s rights as a child with him, we bonded.” disabilities. When she first came home from the Terry gets teary-eyed remembering how she hospital, she had a Babies Can’t Wait referral could have opted to give her son away. She is so from the hospital and received Katie Beckett thankful that she didn’t. And now she can’t funding. (The Katie Beckett waiver serves picture living any other way. “I couldn’t imagine children with serious disabilities whose families living without the impact of what he’s taught keep them at home, disregarding the parents’ me…to have compassion for others,” she says. income and resources). “He is the most precious, brightest ray of At one point though, a provider “dropped” sunshine, who gives meaning to life,” Terry Christian before he went into the hospital for a says. “You look in his eyes and if he can get up scheduled surgery, and Terry knew not to sign a and give you a smile after all he’s been through, waiver that would send him to an institution for who am I to complain?” care. She says she held a press conference at the Terry had to leave Christian at the hospital hospital and refused to take him home without for 17 days after he was born. When he was supports. released, the doctors told her he would be a “I chose to keep him in the hospital for two Sudden Infant Death Syndrome (SIDS) baby, weeks to demand services because if I’d brought “but because I’m a nurse, I knew the things him home, I’d never get services at home,” Terry [machines, medicines] to ask for,” Terry says. explains. She knew the hospital could not She brought Christian home and soon after, discharge a patient labeled “medically fragile” he went into respiratory distress. At the without correct supports and resources. “I hospital, he shut down two breathing machines, knew if anything happened, the hospital was and received an emergency tracheotomy tube. liable,” she says. She also knew if she signed the “Ever since then, he’s been wonderful,” Terry waiver, Christian would have been sent to an says. institution. To date, Christian has been in and out of Terry knew the numbers, too: It cost Medicaid operating rooms and hospitals, with 89 $2,645 per day to keep Christian in the hospital surgeries, 33 outpatient visits, 20 emergency because he has to be in an Intensive Care Unit. It room visits, and a total of 339 hospital day stays, would cost $552 per day for a nurse at home. but “Christian has a desire to live,” his mom Finally, after what she described as an says. The doctors told her Christian would not awful two weeks of leaving her son in the live to be two, but Christian is turning ten in hospital, Terry brought Christian home with October. supports in place. The Department of

Children in Nursing Homes / 23 Community Health implemented a Pilot sleeps right through the treatments every four Program called SOURCE (Service Options Using hours. Resources in a Community Environment), Now, Terry is a part of Georgia ARCH which allows people with disabilities to receive (Advocates for Rights to Children’s Healthcare), home- and community-based care so that they a parent advocate group, because, “parents can stay at home; which is what Christian so really do know,” she says. She learned from desperately deserved and needed. The Model other parents of children with disabilities and Waiver Christian receives now serves children learned to advocate and network. She says she who use oxygen and ventilators by providing a knew that, “If I wasn’t Christian’s voice, nobody nurse in the home. was.” “I don’t ask for anything other than what “The parents are not asking for the moon Christian needs,” Terry says. Currently, she is and all that,” Terry explains, “just the resources appealing to Medicaid for the cost of Christian’s our children need. We know how to take care of supplies. Terry is our kids best,” she paying $1,200 a says. month out of pocket “With the right for supplies that resources, he can do Medicaid should anything. In an cover. She’s been told institution, he wouldn’t that “if he’s so needy, even be outside,” Terry put him away,” she says. recalls. “Over my He would miss out dead body, I’ll on the constants in his institutionalize him,” life too, like his mom, she says. Terry says. It’s hard to Through the develop lasting Model Waiver, relationships in Christian is allotted institutions where 84 hours of nursing Christian with his sister, Destiny shifts change and support per week at employees come and home. Based on go. prior crises that the family abstained, Christian “The joys of seeing him get up when he is not able to utilize the complete 84 hours as wants to and play are wonderful,” Terry says. “I Terry wishes. They like having some weekends wouldn’t be able to experience it if he were in an free of outside interference which increases institution,” she adds. “He wouldn’t be as happy. Christian’s independence, family time and I’m not convinced he’d be alive. He’s so medically privacy. However, Terry continues to advocate fragile.” with nursing agencies to be able to fulfill his At home, Christian receives physical, nursing needs, she says. occupational, and speech therapy every week. At night however, Christian requires He also receives augmentative communication medications and respiratory treatments as often support where he learns to communicate as every four hours, which a nurse must through a computer that the school purchased administer so Terry can get a full night’s rest and for him. Christian communicates with pictures be ready to attend to Christian the next day. On and understands some sign language. weekend nights, Terry sleeps in her son’s room Christian attended public school with a to administer the treatments herself. Christian nurse when he was younger, but has been home schooled for the past three years because of his

24 / Children in Nursing Homes illnesses and number of surgeries. His teacher “I wouldn’t change anything,” Terry says, comes to their home two days a week and except she would advocate for more one-on-one Christian loves it, Terry says. “He loves time for siblings. Supports are not only for the people.” The teacher works with him on fine child, but for the whole family. Terry says she motor skills, attending to tasks, identifying was unaware that the 84 hours of nursing per objects, and using picture boards. He is also week did not have to be split into 12-hour days, learning to tolerate different textures in his but that she could have used a 24-hour day or mouth. 36-hour shift and spent time with Destiny while Looking toward the future, Terry hopes that the nurses were with Christian. her son never has to compromise his Terry does not know where Destiny is now independence. “Should anything happen to me or how she is doing. She only hopes Destiny … that Christian is able to maintain the will “realize the roots that I instilled in her and independence I’ve given him,” she explains. She never give up,” Terry says, “because I could wants to eventually build a home that has have thrown her brother away to society.” Terry separate living quarters for Christian, she says. says she knows Destiny needs her own time, her “It will be his home. I want him to have his own, own space, and her own identity. She says with support,” she adds. Terry believes Destiny was known as “Christian’s sister” which Christian knows how strong his mother is and hindered her in making a name for herself. hopes that she will be an example for him. “I have no regrets other than not using Terry says, “life is good” often, especially nursing hours to be with my daughter,” Terry with the support from the model waiver, but says. And “Christian loved his sister,” she adds, there is sadness in her life as well. Terry’s glancing over the photographs of the two of daughter, Destiny, was ten years old when them together. Christian was born. She says her children loved Terry says she considered seeking each other and there are numerous photographs temporary placement for Christian after Destiny around her home of her children playing left home, but she’s glad she didn’t go through together. When Destiny was 17, though, Terry with it. “Christian is my therapy,” she says. “It says she ran away from home. would break my heart to know other families Destiny felt Terry gave more attention to are out there not enjoying what I have with her younger brother, Terry explains. When Christian,” she adds. Destiny was in high school, Terry says she was Terry advises other families to keep trying lenient with her and she believes Destiny for their children. “You can’t be faulted for became involved with the wrong crowd. Before trying,” she says. “Always ask questions and she left home, Destiny was an honor roll student insist for answers,” she adds. and a cheerleader. “Christian is here for a reason,” Terry says. Terry says she did not have enough support She and the other parents with Georgia ARCH to care for a medically fragile child and attend to share the same belief that their children are here her daughter. She wishes that she had spoken to make a difference. “Until you get active, with the medical team voicing Christian’s needs things don’t change,” she says. so that more nursing hours could have been “Don’t give up,” she advises. “I don’t care what utilized when Destiny was at home so that you have to do and what you have to go through. You hopefully the family could have remained in are their voice and their vehicle!” tact, Terry says. Readjusting Christian’s nursing hours would have allowed Terry to spend more one on one time with her daughter as she would have been able to leave Christian with the nurse.

Children in Nursing Homes / 25 Finding the way home Cobb County Mental Retardation Center. The doctor there said Chase was “uncontrollable and “I figured by now, since 1995, since needed 24-hour supervision.” The doctor issued River’s Crossing closed and Brook Run closed — a 10-13 (an order to admit a person to a I thought surely that everybody, at least in psychiatric hospital), and Chase was sent to a Georgia, lived at home,” says Lori Bagnell. In hospital. 1995, Lori’s son, Chase, was the first child in From there, Chase was transferred to Brook Georgia to leave an Run, an institution for institution (River’s people with mental Crossing in Athens, retardation. At Brook Georgia) and move into Run, Lori was told they his own home in the had neither a place nor a community with the program for a child and assistance of 24-hour could not guarantee his caregivers. safety. Lori is surprised that The first time Chase today, ten years after was sent to Brook Run, Georgia’s first child left an Lori did not leave him. institution for life in the The second time, she says community, still more than she left him for the 48 150 children live in nursing hours the 10-13 required. homes and institutions Chase visits with his mom and At the end of the 48 throughout Georgia. hours, a man from Brook sister in his own comfortable home. “I hope to be able to Run called Lori and told help other children like her to come get Chase. Chase,” Lori says, “and we cannot have any of The Brook Run representative said he would call them in institutions or nursing homes.” the Department of Family and Children’s Lori knows what institutional life is like for a Services (DFCS) if Lori did not come for Chase. child through personal experience. “I was one Again, Lori felt that she was at a dead end of those parents who said I would never put my where no one would help since DFCS had child away — in an institution or even away instructed her to take Chase to Brook Run. from home,” she says. “I was so wrong.” “People didn’t want to take time or initiative Lori tried everything imaginable to obtain to try and help him,” Lori says. In February of assistance that would allow Chase to remain in 1993, Chase was transferred to River’s Crossing, the family home. Chase, who was seven in 1993, 93 miles away from his home and family. had become more difficult and extremely hard “Everyone was so nice at River’s Crossing, to handle Lori says. “I began to seek some kind but it was an institution… a lot like a jail,” Lori of help and found out real quick there was not says. “I couldn’t stand going upstairs. The long any out there,” she says. hard floors, the cement walls; there was nothing Chase’s teachers were unable to control him homey about it…a very sad place,” she adds. and constantly called Lori to pick him up from Lori drove to Athens to visit Chase at least school. Lori thought that of all people, teachers every weekend. But they avoided spending time trained to work with kids with disabilities in Chase’s room. “The rooms were empty, should be able to work with Chase. She felt she except for the bed and maybe a dresser,” Lori had no where to turn. “Everybody was putting says. She brought Chase toys, but they always him off on everyone else,” she says. disappeared. The school recommended Cobb County Lori remembers the joy in Chase’s eyes when Mental Health, but she was sent from there to she arrived for visits. She also remembers the 26 / Children in Nursing Homes look on his face when she left, and that she cried received full time support and began interacting as she drove away from River’s Crossing. She with others in the community. could never dismiss the feeling that she had His family was close enough to visit often, abandoned her son. She carried guilt with her and Lori usually tucked Chase in bed at night. every day and prayed that Chase did not feel She says she lay down with him in his bed, until unloved and abandoned. he nudged her, indicating that he was ready for Inside River’s Crossing, Chase’s potty her to leave. Chase was comfortable and happy training stopped. He lived on an all-girl floor in his home. (“because he was smaller”, Lori says). This was Chase’s behavior and health improved, after not what Lori and her family wanted for Chase’s his family and provider found caregivers to childhood, but it was the only support they whom Chase could relate. Chase began going on could get from the state. Chase stayed at River’s outings and traveled with his family and Crossing, and Lori continued advocating for a caregivers. better way. On July 15, 2001, when Chase was 15 years Lori learned of community-living practices old, he died in a car accident. The loss was very in some northern states. She researched, wrote hard on his family and his community. Lori letters, talked to the press, and made numerous says she is grateful that Chase had the phone calls. Lori went to New Hampshire with opportunity to develop a life outside of the employees of the Department of Community institution for the last six years of his life. Health to examine community placements from Chase was nine years old when he moved out a recently closed facility. Lori knew a similar of River’s Crossing. He had spent almost three placement could work for Chase. She just had years there. While his mother knows the staff to find the support outside of the institution. did their best, she wishes he had never lived in Lori wanted the money that was going to an institution. River’s Crossing for Chase to follow him into the She hopes there are better options for families community. The numbers were in Lori’s favor. now. “I tried everything and saw that he was She knew it would cost $75 less per day for Chase to falling through the cracks, and I would not let live in the community than in River’s Crossing — a that happen,” she says. difference of $27,000 a year. Her advice to other parents: “I would tell At the time, in 1995, it was not possible for them not to give up. There is something or Chase to live with his family and receive somebody out there they can get help from.” support from the state. Determined not to give When somebody says no, advises Lori, go above up, Lori decided that if the state would not that person. That was how she helped Chase provide support to Chase in their home, they’d leave the institution. just do the next best thing, and get Chase his As for the 150 children still living in own home in the community. institutions and nursing homes, Lori believes That’s just what they did. Chase left River’s that they should have the opportunity, as Chase Crossing on November 15, 1995, and moved into did, to live in a home in the community. “One his own home located 17 miles from his family. hundred and fifty is not that many when it “The staff from River’s Crossing was very comes to getting them out,” Lori says. “One helpful in making the transition,” she says. hundred and fifty waivers doesn’t seem Chase visited his new place several times before ridiculous.” moving, and his new staff was educated on his Not to this courageous mother who found a likes, dislikes, and treatments. way out. Chase’s home was located at the end of a quiet street with a fenced-in backyard. The Dedicated to the memory of house was modified to fit Chase’s needs. He Chase Barrett, April 1986 – July 2001

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