Although Jackie and Mike Golden moved out of their home in Lutherville, they have retained management of the building and direct influence over who works with their son. They recruited, interviewed, selected, trained, and built a team of people who will provide Joshua with the full-time supports he needs. Fortunately, most of the support staff have known Joshua for many years. Jackie fills in for staff when they are sick or not available to work. When they are short-staffed, it is Jackie, again, who provides the support. Jackie stops by the home every evening to check on Joshua, coordinate appointments, grocery shop, talk with staff, and generally keep things running smoothly. Good communication with the people who work with Joshua seems to be the cornerstone of successful support.

The Goldens know what works for Joshua from past experience. "We have learned from the good and the bad. We need to do all that we can to control who comes in and out of Joshua’s life," says Jackie. When they did not have control over the staff members who supported Josh in traditional settings, such as the hospital and a group home, the effects on the quality of Joshua’s life were negative. Some staff members were neglectful and unpleasant with Joshua; others took advantage of him. Since he moved back to his home in June 1998, the Goldens have noticed a new and delighted expression on Joshua’s face; he looks like a child again. Because their son does not speak, they rely on facial expressions to gauge his emotions. "We took extreme measures to remove negativity from Joshua’s life," says Jackie. The Goldens, with the help of their service coordinator, wrote a plan for their son which redistributed the funds that Joshua previously received to support him in a group home setting. They contributed time, money, and their home while the State provided staff support, back up staffing, home modifications, and administrative costs. The plan also called for a house mate with disabilities who would make the entire support plan more economical for everyone.

The Banks

The plan also called for the house to be licensed as an agency residential site with the agency and the family assuming a shared responsibility for the upkeep of the home. Staff support would increase from 20 hours a week to 80 hours a week. Much to everyone’s surprise and delight, especially Walter’s and his mom’s, the plan was approved. The home was licensed, and the increased supports began in July 1998. Staff assist Walter with personal care, professional appointments, cooking, shopping, leisure activities, cleaning, and laundry. Walter is learning to do as much for himself as possible. Mrs. Banks’ niece manages the finances and keeps a watchful eye on both Walter and his mother. She plays a critical role in the success of the supports that Walter receives. Mrs. Banks hopes that Walter will not have to leave his home under any circumstances in the future. "He grew up here, this is his home," says Mrs. Banks. With the help of lawyers, the family has ensured that Walter will have the financial means to stay in his home. Although he eventually may need a house mate to share expenses, Walter will cross that bridge when the time comes. For now he is happy to be home.

"Well-intentioned professionals were asking me to be realistic and accept my daughter’s disabilities," says Lois Swartzentruber of Oakland. Her daughter, Laurie, lived in a group home and was very unhappy. "I had a dream of something better, but I couldn’t do it on my own," she adds sadly. Laurie, 26, also had a dream. As one of three women who lived in an agency-owned home, Laurie wanted her own apartment and support that made sense to her. She endured getting up early on Saturday mornings to ride to her house mate’s doctor appointments because there was no extra staff to stay with her at home, she endured staff’s unruly children in the home, and she endured a houseful of fat-free food because all of her house mates were on diets. "I want my own apartment," Laurie pleaded at numerous yearly planning meetings.

Only through drastic measures could mother and daughter realize their dream. In an desperate attempt to gain as much control as possible, Lois decided to pursue guardianship for her daughter. In this process she met a service coordinator who showed them a different path. The service coordinator helped Laurie develop a person-centered plan and find resources that could make the dream a reality. Laurie’s plan involved renting her own barrier-free apartment near her mom, receiving 24 hours a week of personal assistance through the health department, and 10-12 hours a week through a local agency’s family and individual support services. This amount of support, teamed with Laurie’s going home every weekend, was enough to make it work. Since Laurie needs daily support, they initially decided on a live-in house mate who did not have disabilities. The person received reductions in room and board in exchange for supporting Laurie Monday through Friday. This worked for the first six months, but Laurie’s seizures were too much for the person to handle.

Through a local agency’s family services, David has begun receiving personal care supports. Someone comes to his home five days a week for one hour to help with personal care. Initially it was difficult for the Larmore’s to get used to a new person in their home but they appreciate the assistance. "We did not know that these services existed for our son," says Sara, reflecting on the number of years they solely cared for David. The family is also benefiting from a volunteer who drops by to visit. The volunteer will eventually learn how to support David so the two of them will be able to go places together and give Mr. and Mrs. Larmore an occasional evening alone. The home was recently renovated to move David’s bedroom to another part of the house. Not only did this give everyone more privacy, it also gave David more space to accommodate his motorized chair and computer equipment. David appreciates the extra space even though the move to the other side of the house was a tough decision. Any changes, even the good ones, can be difficult. Now the Larmores are planning for the future.

Nicole and Amy

                                            The Mckee's                                    The McElwain's

Nicole and Amy were classmates at the Maryland School for the Blind. They are now house mates in a charming home in Harford County. "We know our daughters better than anyone else" says Kelly, which is why Kelly and Nancy, the girls’ moms knew that their daughters could not live in a traditional group home. Too many people would create too much stimulation and excessive noise. So careful pairing with a house mate would be the most important factor in a successful support plan after Nicole and Amy left school. Kelly McElwain started planning for her daughter’s future almost 13 years ago. She visited group homes and vocational workshops and knew that they would not work for Nicole. She needed something different. Nancy McKee started planning for her daughter about four years ago. She knew that she wanted something different for Amy once she left school. Through the Maryland School for the Blind, Nancy and Kelly met and joined forces. They hoped that if they could do something extra for the girls, the State would fund a support plan for their daughters. They began sharing their story and dream with decision makers at the Developmental Disabilities Administration. "We knew that we had to sell them on our daughters’ needs," says Kelly. "I put a lot of effort in the strategy of selling the idea to people who could fund it."

The plan was to jointly purchase a small, comfortable home for the girls; find a flexible agency to share the responsibilities of full-time support; and move the girls to their new home, in a series of transition steps during their last year of school. And that is exactly what happened, although the first year was not easy. At first, it took a while for everyone to adjust to their new roles. Patience was the key. Kelly and Nancy learned that it was difficult for a parent to let go. Amy still comes home every weekend, but Nancy believes that this will change in the future. "My comfort level will change over time," says Nancy. The moms formed more than a formal, legal partnership in a home; they also formed a partnership of support with each other. "We talk a lot, vent frustrations, and share information," said Kelly. When asked about their motives, they responded that they did not want their other children to be responsible for caring for Nicole and Amy. They firmly believe that all of their children need and deserve to live their own lives. Kelly compared it to saving for college for her other kids. "It is an investment in your child’s future," she stated, "We wanted to set up our daughters’ futures now while we are healthy and able to enter into a partnership for support."

"Tell as many people as you can that you want something different!" That’s the advice that David Thomas, 33, of Elk Ridge gives when asked what message he would like to share with other people with disabilities. David has recently moved into his own mobile home on a leased lot in a quiet neighborhood in Elk Ridge. He used to live in an agency-owned townhouse with two or three other men. He was not happy there. First of all, staffing did not make sense for him. Because he worked at night, David did not need overnight staffing. But, since his house mates, who worked days, did, staff generally worked in the evenings after his house mates got home. David did not have enough staff during the day when he needed them.

Secondly, David did not like the house itself-it had too many steps. Moreover, he secretly dreamed of having a guest room, his own bathroom, and space for a recliner in his bedroom. He even imagined an extra room to display his model train set. "Start with your dreams" advises David’s mom, Nancy Rhead, when describing how she helped her son make the needed changes in his life.

Finding affordable housing in the Columbia area would prove to be the biggest challenge. Nancy, recently retired, was not in a financial position to purchase a home for David. With the help from their service coordinator, Nancy and David developed a person-centered plan that identified what was important and financially possible. David wanted to live in the Columbia area, near his mom and near all the people he knows. David also wanted to continue his current nighttime custodial job.

David’s service coordinator became genuinely interested in David’s dream of home ownership and worked with the family to find a home in a limited price range. After looking at many homes, they came upon a mobile home. Although Nancy Rhead and the service coordinator were hesitant at first, David fell in love with the place. It met all of his requirements: guest room, model train room, large bedroom, and private bath with the added bonus of a Jacuzzi. "The Jacuzzi is the best," exclaims David. He anticipated needing a sign-up sheet for all the people who wanted to use it.

The biggest hurdles were still ahead. Would DDA help with the down payment? Would DDA approve the revised support plan? Would the mortgage be approved? Did they have enough furniture to fill a house? A last minute scramble to raise funds for a down payment was necessary. The effort was led by their service coordinator. Family, friends, and professionals all contributed to David’s down payment fund. "Things were moving quickly and slowly at the same time," says Nancy, adding, "A lot of patience and persistence was necessary." Everyone contributed to the small miracle it took for David to become a homeowner. David moved into his home at the end of June 1998. He wears the house key around his neck and rarely takes it off.

David receives four hours a day of staff support from a local agency. He continues his night job and his volunteer work on Saturdays at the B & O Railway Museum. He is busy setting up his model trains in the spare room and is currently interviewing a suitable house mate to share expenses. David reports that he likes his newfound freedom and independence. He likes deciding his own time to go to bed, turning off his own TV, and working with staff who complement his schedule. He especially likes the fact that he does not worry about who may come through the front door. When you control who has the key to your house, then there are no surprises. Even his mom doesn’t have a key, but he is considering giving her one in case of emergencies.

David likes having his mom around and recognizes that he would not have his own place without her support. "Mom is helping me a lot," he says. "I call Mom to the max because I don’t know what to do all of the time," he adds. This was especially true when he used dish detergent to clean out the jets in his Jacuzzi. He ended up with a mountain of bubbles. He was happy that his mom was around on that day.

Words of Advice

Start with your dreams.

Talk to everyone about what you want.

Get the best information about possibilities; attend conferences.

There is no one model of support. Each plan should be based on individual needs, desires, and financial realities.

Be active in your community; people are willing to contribute to a worthy cause.

A good service coordinator is critical to assist in navigating the system.

This book shares stories written by families whose sons and daughters were participants of the Individualized Funding/Service Brokerage pilot project. They describe their trials and tribulations endured over the years and how their lives were changed with participation in the pilot project. The stories they share have similar themes. As their children reached adulthood, families and individuals questioned the options available to them. An uncertain future with no meaningful jobs and limited housing options was frightening, however, this changed for them with individual funding and autonomous planning.

John

The second of two children, John was delivered with difficulty in June of 1952 to Hilly, then 39, and Henry, 16 years her senior. Brain damage was assessed at age 3 whereupon he was labeled "moderate" and wait-listed for Woodlands. Over Henry’s ongoing objections John was kept at home and "special" schooled until age 16. That year Hilly finally lost her battle and John was admitted to the Institution. The year was 1968. He could by then neither read nor write and had been "sheltered" his entire life.

Throughout his twenties, through his mother’s sudden death in 1974, until his father’s death in 1981, John continued to reside at Woodlands where he was systematically deprived of privacy, private property, personal freedom and safety. Beaten often and medicated routinely, John learned only to earn black stars and swear. His best friend was completely non-verbal and a foot shorter than John’s 6’8" basketball player frame. Life was not good, but they watched cars go by on Columbia Street, and laughed. Sometimes they went bowling. From his early years at "special" school John had learned to mimic, at Woodlands with Jamie, he honed his skill. They were inseparable.

After Henry died, the "experts" at the Institution tried to block John’s move back to his home community. Saying he was "institutionalized", and destined to fail, he was released on a day program to what was then known as Variety Farm. John was on his way "home". Three moves and 10 years later John again faced "expert" discrimination. Training programs that ended with no job prospects, education programs that refused him entry on the grounds that he was disruptive in the classroom, group homes that chose not to invite him to stay because he wouldn’t stop swearing, burping or farting - they said he was dangerous when he was only attention-seeking. His size became his second, but perhaps most important, disability. Yes, he was a hard worker, when left on his own. Yes, he was socially appropriate, when he was not with his peers. Destined for failure? It looked more than possible, it looked inevitable.

In 1991 his then social worker, Judy Acheson, recommended applying to become part of the new pilot project: Community Brokerage! Perhaps individualized funding, applied creatively, might work where standardized, homogenized, bulk goods block funding was only creating nightmares.

In 1992 John was accepted as one of the first seventeen. Now, instead of being trained forever at $13 an hour to clean his own home, John has a local community based for -profit agency, come in for 2 hours each week. Instead of attempting to fit him into group classes, he attends 1 on 1 swim lessons once a week. Nobody needs to remind him, nobody needs to drive him. He attends with gusto and perseveres heroically, often comically, because he is, in fact, afraid of water over his head. His instructors say he is a joy to teach. They are not attached to any non-profit or special needs group. They are employed by Delta Parks and Recreation. Each session or block of classes John is reassigned a new instructor. Male or female, it makes no difference, he’s on the bus, swim suit and flippers at his side, rain or shine. If there is any problem, it is that he arrives too early. They’re working on that.

The Continuing Education Special Needs Chairman said, four years ago, that John was threatening his teachers. They were afraid, John had to go. He now has two different female 1 to 1 workers he cooks with, both in his own home and theirs. Are they afraid? Sarah is 5’2" and all of 20. She has never received any kind of training focused on mental disability. She does work as a nanny, she is a student. They have a blast. She calls him a social butterfly -- "He knows everybody, and not just in Ladner . . . It’s amazing!" Caroline has taught him tacos, chili, porridge, waffles, Boston clam chowder, stir fry, spaghetti sauce and egg and tuna salad for sandwiches. He loves to eat and he has a great memory, but he’s lazy. "If somebody will do it for him, he’ll let them . . . he’s not stupid!"

Caroline, too, has never received special training dealing with disability. She is a single mother of two and holds down a full-time job with London Drugs. Some weeks she works with him on Monday mornings, some, Monday evenings, some, Tuesday evenings. He always knows, he’s always prepared (he must buy the groceries on his own) and often they invite company.

No part of his routine is routine; he has a full social life; Christian coffee house where he never swears; Theatre Terrific and drop-in movie nights at "Ladner Station" where he finally, is getting along with his peers.

Individualized funding has made the difference. John is home now. Please don’t take this away. He has worked hard, and endured. His support group has fought, cried, laughed and been awed. Maggie, who as a social work student bathed John at Woodlands, and went on to work with the Ministry of Health at their Services for the Handicapped office, and more recently with Burnaby Association, knows the system from both sides. She is, "the guidelines for monitoring", within the system, without, she is part of John’s team. She has known him since that summer in 1978. She too, can tell you, individualized funding works for people like John.

John has almost no family left, but he is surrounded by committed friends and a supportive community where he has history and connection, and where he too, is a consumer.

His mother would be pleased, his father dumbfounded. Please hear what I say. I am his very proud sister.

Shirley

There is Life after Nineteen.........

January 12th, 1995

Meredith’s nineteenth birthday! The first day of adult life, is the beginning of an exciting and challenging "Rite of Passage" for most people. The unfortunate reality for people with disabilities, however, is that it is always challenging and rarely exciting. Too often the ending of child services at 19, has meant minimal activities, and a loss of purpose and interest in life for these young adults. Inevitably, also their aging parents either renew the time-consuming quest for services, or live with the guilt of personal freedom, taken at their child’s expense.

January 12th, 1996

Meredith is 20 years old and happy! The last year, despite its tiring and stressful times, has been positive. Her children’s group home closed on August 31, 1995, the day she moved into her rented condo with 24 hour staff support. "The Condo" represents a transition within transition. It gives us time to consolidate our vision for Meredith’s future. When we finally choose a house and roommates, everything else will be in place.

How was this accomplished?

The Pilot Project for Individualized Funding run by Community Brokerage, allowed us to plan in depth, determine goals, and customize services to Meredith’s needs. She, as a bright but severely physically disabled person, is not a good candidate to "fill a space" in an existing group home.

We were able to research service providers, and thus have real confidence in our choice. Chris and Barb Thomas (Pacific Coast Community Resources) have been truly supportive and creative in service delivery. At this point we really do have a team approach to Meredith’s care.

We have been lucky to retain able staff from Meredith’s group home, thus giving her some continuity and security. An over-age year at school has also provided a useful familiar setting.

January 12th, 1997

At 21 years our vision for Meredith is that she will be living in a house, hopefully within our neighborhood. Her hammock will provide summer pleasure for outside time in the garden, and she would like a dog for company! Her roommate (s), we hope, will be able to talk to her. She already has a bank and a doctor in this area, and people in stores are getting to know her. She needs to develop some more friendships, perhaps by joining a local church. We also need to work out day programs for when school ends --- Meredith enjoys action filled days.

There are "many miles to go before we sleep", but this situation is far from the prophetic "Doom and Gloom" scenario which had been anticipated. It is our sincere hope that others may benefit from individualized funding and the freedom to have some control over their children’s destinies, which this approach to service delivery brings.

Hilary and John

When a family is blessed with the gift of having children, little do they think of the challenges they will have to face in our ever changing world.

Challenges, such as:

- sharing mom and dad with a new baby brother or sister.
- being uprooted from friends when mom and dad get a new job and having to move to a new house.
- caring for a family member if one gets sick.
- trying to get a space in college or university.
- getting a "good job".

These are the struggles all of us have faced while bringing up a family. Our family has been blessed with two sons. Jordan, our youngest son was born with "special needs". He was diagnosed as mentally challenged with Attention Deficit Hyperactive

Disorder. From a very early age, Jordan decided to meet these challenges head-on by touch, feel, and taste. He was not content to sit and watch, he was a "doer". He would find out what the world was all about by his own investigation.

We had little time to think about the current difficulties our family faced, let alone worry about the future. Our immediate concern was to provide for the family’s immediate needs. We lived one day at a time.

Jordan’s life struggles became horrendous. Our family reached a turning point when Jordan was 15 years old. We received a phone call from the Superintendent of Special Education who stated that due to Jordan’s difficulties at school, he could no longer attend high school in North Vancouver. This meant that Jordan would have to complete his schooling at home. The challenge of staying home, away from his peers and friends became too much for Jordan and our family.

One month before his 16th birthday, Jordan moved away from the family home to live in Port Coquitlam, 30 kilometers away. He lived in a home that was supported by service providers. Jordan and our family had to dig very deep to get the strength to face this latest and most difficult challenge. However, Jordan was soon back in high school and graduated in 1994.

During Jordan’s stay in Port Coquitlam, our family faced many difficulties because of the "System". We had to work with a system where the service provider contracts directly with the Ministry of Social Services. We had no knowledge of the contract, nor did we have any input. We felt like an outsider. When Jordan was nineteen the Ministry decided he should move from his home in Port Coquitlam because he was now an adult.

During this time, and, quite by accident, a friend asked us if we had heard about "Individualized Funding with Service Brokerage." We had never heard of it. After doing some research, we decided this was for Jordan and our family. We applied and were accepted. Jordan has been on the Individualized Funding with Service Brokerage Pilot Project since 1994. Jordan and his family can now purchase services based on his needs. A General Service Plan was developed by the broker, with input from Jordan and his support network. Service providers were contracted with, and are responsible and accountable to Jordan.

Jordan said he wanted to live in his home community on the North Shore. A home was rented for him. Unfortunately, after living in his home for three weeks, the service provider gave sixty days notice to cancel the contract. We arranged for a new service provider and a new home on the North Shore. Jordan moved in on January 5th, 1996. Jordan and our family faced the challenge of yet another transition - a new home and a new vocational and recreational program. However, Jordan continues to receive the support of his staff to help him adjust to his new situation.

Jordan has never backed down from adversity. He has faced all his challenges, head -on. He is a "doer". Jordan has received love and support from all the people involved in his life. He is a very loving, caring person who has a lot of empathy for other people. On two occasions, Jordan had to go to hospital. He visited other patients, holding hands and talking to them to make them feel better, disregarding why he was there. Our gift from Jordan is the love and caring that he gives back to us. He truly is "Special".

Individualized Funding has given Jordan and our family the opportunity to choose services based on his needs as stated in his General Service Plan. Service providers are responsible to Jordan and his support network, a major step forward for our family. Brokerage has been an important component as they helped develop Jordan’s General Service Plan (the first time one had been developed), provided information, and service. Unfortunately, the Ministry of Social Services did not renew the contract with Community Brokerage Service Society. Just one more challenge our family has to face.

Roy and Pat

Lesley was born in Edmonton in 1971. Her brother Murray, was a typical firstborn --

2 1/2 going on 25, and very much Dad’s boy. Then, along came Lesley, one month early, but a healthy weight and absolutely beautiful. She grew and did all the usual things that babies do until she was 10 months old, when the boom dropped. She became ill with a cold, and an alarmingly high fever with convulsions. We were living in Calgary where she was rushed to Foothills Hospital. She was nearly lost - stopped breathing for 5 minutes and, therefore, the brain damage which included the physical consequences. We brought her home, virtually as a newborn with the "wise" words from some hospital official that this child would present never-ending grief to us. Our hearts were broken.

A month later, a pediatric team asked to do an assessment of Lesley’s disabilities. I got the feeling this was an experiment. The first test, of course, was an EEG which was expected to be flat. Instead, there was quite a bit of normal brain activity! Well! The technician’s know-how was in question and the EEG was repeated with a different technician and the results were the same! What a feeling! To see the sun shine through those clouds!

Of course, Lesley was developmentally delayed and received daily therapy for several years. When we moved to Surrey in 1975, she had become less medically fragile. We purposely bought a home near the Variety Treatment Centre so Lesley could continue with her therapy and attend pre-school. Progress was slow, but the progress never stopped.

Lesley went through the elementary school years in a special class within an integrated school. By this time, she was a non-stop talker, a good reader, and showed the beginnings of a great sense of humor. It seemed her mission in life was to meet everyone in Surrey and try at least one "knock, knock" joke on them.

The next step was on to junior high school in a modified grade 8 class. This turned out to be a disaster - wrong teacher, wrong teacher’s aide. This led to difficult behaviors in the class room. As a consequence, Lesley spent most of each day in "time outs" in a medical room or bathroom. She had nothing to do, not even a book to read. Lesley decided to bang her head on the walls. The school’s suggested solution was to "beef up" the walls of the medical room so Lesley’s banging would not bother the secretaries. I was appalled! Some well chosen words to the right party resulted in a very special lady being hired to work one to one with Lesley.

The first thing this lady did was educate the teachers and beg them to accept Lesley as she was and to treat her with respect. The turnaround was miraculous. She progressed through the junior and senior high school years and made many friends. Some of her friends to this day are former teachers and aides.

Report cards told what Lesley could do as did feedback from Variety’s Villa group home, where she had moved from home at age 15.

The Variety Villa was a children’s home and the residents were supposed to move on at 19 . She was approved until 20 to attend an extra year at school. Flashback! The preplanning- all tentative and the required assessment by a psychologist/teacher were done when Lesley was 17. Not a thing was done until she was 20. Lesley had a whole year with nothing to do, no school, no program. The following year, a one to one worker was hired for her. As to a new residence, we were told by her social worker that the best that could be offered was a proprietary care home. We said, "NO". What we had in mind was a staff supported sort of group home but with 2 or 3 persons and more adult oriented. There were dozens of useless planning meetings with the social worker, the teachers, and Villa staff. We seemed to be going nowhere. Then, a wonderful house came to our attention, brand new, three bedrooms, ground level and operated by two well-known and reputable people. Yes!! No female roommates? That’s just crazy. It seemed impossible but two men were found, who had applied years after Lesley. One was even from out of town. Lesley and two men? No!

We were directed to Community Brokerage Service by an MSS senior person who thought Lesley and two men weren’t great either. Lesley was accepted into the Pilot Project in September, 1993 and moved into her new home February, 1994. She had the whole package -- individualized funding and service brokerage and two new roommates. However, Lesley has since moved houses and changed service providers, as well as roommates. The Pilot Project brokers worked tirelessly with Lesley and us (her family), interweaving Lesley’s needs both residential and vocational, possible roommates, area of residence, health and safety issues, and a dozen other details.

Via the Pilot Project, Lesley’s life changed dramatically. Needed services and recreational activities were suddenly so much easier and so much more quickly accessed. Because Lesley is very gregarious and likes to be busy, the opportunity to choose , perfectly fits her personality. She found out early that cleaning her room and doing laundry are not what they are cracked up to be but school (Invergarry), along with horseback riding, French classes, movies, the theatre, lunch with friends, and shopping are some of her choices. I am pretty sure she does know everyone in Surrey now!

Rick and Kathy

Brian

We are the parents of a mentally handicapped young man, Brian, who was born in February, 1969 with cerebral palsy. Everything that comes natural to other children becomes an impossible task for him. It takes a lot of love, patience, tolerance, perseverance and guts to bring up such an individual.

I remember the time when Brian finished his high school education at the age of 19, we had a meeting with a social worker whose name was also Brian, to discuss Brian’s future. The social worker, Brian, was a dedicated professional with love and understanding and that is why I still remember his name. I wish there were more social workers like him. After the meeting, Brian was placed in VARCO WEST, a workshop established for mentally handicapped people. Because we were both working full time and would not reach home until about 6 p.m. every working day, Brian would need someone to take care of him after he got off work at 3 p.m. It was arranged that a worker would come to our house between 3 p.m. and 6 p.m. Monday to Friday to cover our absence. It was not the best arrangement, but as there was no other alternative, we had to try our best to make it work. Brian’s name was then put on the long waiting list for a long term resident group home.

The aforementioned arrangement lasted for approximately 2 years. Then we got a phone call from the social service regarding the discontinuation of the service. Meetings and discussions then followed during which we tried to reason and fight to retain the minimal service we had, but failed. We would never forget that final meeting we had with Brian’s then social worker who came to our house and advised that this kind of service was only for a short duration. As Brian had it for almost two years, it was impossible for the service to continue indefinitely. It seemed to us that the social worker was only making a business decision without feelings, emotion or consideration as to how working parents could cope with the discontinuation of such basic service. We were disappointed, scared, and did not know what to do next. The only possibility we could think of was for one of the parents to quit his/her job to take care of Brian. We did not quit our jobs because we needed both incomes.

Brian’s life for the 2 years that followed was misplaced and badly disrupted. As the workshop Brian went to work at everyday closed at 4 p.m. and we could not reach home until 6 p.m., we arranged with HandyDart to pick up Brian at 4 p.m. at the workshop and drop him off at home last, so we could meet him at home. But the HandyDart running schedule was so unpredictable which resulted in Brian’s parents getting a lot of complaints from both the workshop and HandyDart. At one time the workshop threatened that Brian would have to stop attending if his HandyDart pickup continued to be late because the workshop could not afford to leave a worker there after 4 p.m. There were occasions when Brian did not get home until 7 p.m. and by that time he was tired and hungry, with a worried look on his face.

We then tried to find families in the neighborhood who were kind enough to care for Brian from 3 p.m. to 6 p.m. Monday to Friday and willing to take a minimum wage. Brian had to go to different homes for months until no family could do it anymore. By then we thought we had exhausted all avenues. We were so frustrated and mad with the system. We were then introduced to Community Living Society and Community Brokerage Service who in turn, advised us about the "Direct Individualized Funding Pilot Project". We met with the broker from Community Brokerage Service several times. When the broker found out that Brian had to wait in a car parked in a dark car-park alone for one and a half hours everyday waiting for his father to finish work to take him home, the broker, without hesitation, made arrangements immediately for a worker to care for Brain between 3 p.m. and 6 p.m. What a difference in attitude towards the same subject matter.

Later on Brian was matched up with other clients for the purpose of becoming group home partners. Brian is a happy good-natured person, but is a very shy and extremely withdrawn young man who does not like changes. Once he settles into a pattern he prefers to stick with it. Brian has the mentality of a three year old. What he loves most are his elder brother and parents. His immediate family is his whole world. On several occasions we had to put Brian in a Respite Care Home for weekends. He was so upset and unhappy he would not eat, sleep, or do anything but stand by the window looking into the streets waiting for his parents or elder brother to come and take him home. Brian indicated to us that he did not wish to leave home. Putting Brian in a group home is just like kicking a three year old kid out of the house and putting him in a house full of strangers.

After a few sleepless nights, we and Brian decided that he should stay home instead of moving into a group home. Then a miracle happened. Another broker from Community Brokerage Service met with us and advised that Brian was in the "Direct Individualized Funding Pilot Project" which allowed Brian and his family members to choose the service that best suits Brian. After a few discussions, a proposal that catered to the needs of Brian was drafted, and without too much of a problem it was approved.

Brian is now 27 years of age. Over the years we experienced happy moments together, stressful and frustrated times, and even tearful evenings. Since the introduction of the "Direct Individualized Funding Pilot Project", Brian has been living happily at home with his parents and elder brother. We are also given to understand "Direct Individualized Funding Pilot Projects" costs much less than "Group Homes". This could not have happened without individualized funding and the assistance of Community Brokerage Service. We want to tell the world that the "Direct Individualized Funding Pilot Project" is working wonders for us and for those who need it. Please make it permanent.

Dora and Albert

"What Community Brokerage Service Society Meant to Us!"

"Oh Happy Days--Freedom at Last."

Our real lucky days began when we were connected with CBSS by a wonderful social worker. An earnest journey had begun toward home placement and individual direct funding.

With CBSS we had immediate one to one contact available. They were always there for us. Pick up the phone and someone was available to talk to you or return your call. The social workers seemed so overworked they were unable to give the same quality of service.

The first home Sherri was placed in was inappropriate. Sherri’s father writes, "I remember the Saturday Sherri moved into her new home. We had loaded up Sherri’s personal belongings in three cars. Sherri ended up driving with me. She was absolutely ecstatic, beaming and smiling from ear to ear. To think that she was moving to her own place and able to share it with two other girls. It was a sunny day and I had to wear sunglasses. They were also used to hide the tears, though I was very happy for Sherri." She was very happy to move in, but soon became very unhappy. We turned to CBSS for help and they were there again.

Sherri has been in her new home for one year now and is very contented. She has gained independence and good self esteem. We hate to lose "Brokerage". It has been the brightest light of hope we could ever see in Sherri’s 25 years.

It is very hard for families to stay together when a member has "special needs". We also are finally enjoying "new found freedom" in our lives, as are Sherri’s siblings.

Brenda and Gerry

A therapist sits in front of one of those wooden cut out puzzles and tries to figure out how it all fits together. It takes time. Finally the task has been done, but not without some perseverance.

It is one of Ricky’s fourteen puzzles that the therapist tried to master. Now its Ricky’s turn. First he dumps all the loose pieces of the fourteen puzzles in one big pile, then he makes sure each piece is upside down. Now he is ready to start. Within 20 to 30 minutes all fourteen puzzles are back together Although Ricky’s accumulative years number 35, his mental capacity is somewhere around that of a 5 year old child. Yet in spite of his limitation, he has figured out that the upside-down puzzle pieces, without the confusing colors on the other side, are much easier to put together.

Ricky lives in a different world. When he was three or four, he was diagnosed as autistic. As loving parents we desperately wanted to provide for his needs. When Ricky had reached the age of 7, I had joined the parents of the Delta Chapter for the Mentally Retarded Soon I was president of the association. Yet Ricky remained without attention to his needs. For only three weeks he was in a school for the "mentally retarded," as it was called in those days. A desperate phone call from a frantic teacher brought his education to an abrupt halt. He did not fit in.

Seven parents with autistic youngsters joined together in a desperate attempt to find help. They appealed to the then Minister of Human Resources, the Honorable Grace McCarthy. This wonderful lady, as she sat down to listen to us, had an immediate grasp of the severity of these family situations. This was the beginning of the "Gateway School for Autistic Adolescents". Yet, as president of this new association, it took us another two years to purchase the property, have it rezoned and passed by the local government before the doors could be opened. Two and a half wonderful years followed in which Ricky progressed marvelously in his social skills, in reading, and in many other ways.

But alas, the Government in B.C. changed hands. The funding was cut off for each individual participant after they had been involved for only two short years. Again, Ricky did not fit into any of the existing programs. It was always the same: this is the menu that we offer, if he cannot cope, we can’t help you.

Having resigned from the board of the Laurel House Society that had served both its own constituents of autistic children and also taken over the management of the Gateway Society, I joined the board of the Simon Fraser Society for Mentally Challenged Individuals in Coquitlam, by their request. For years Ricky had remained without any meaningful support system.

Finally in desperation, (Ricky was by now a young adult), I bypassed the social worker, to appeal directly to David Young, Ministry Area Manager. I immediately found an understanding response in him and the wheels began to turn in Ricky’s favor.

During this period there was one unfortunate placement of Ricky into a day mod that turned out to be a disaster. This is certainly not the fault of the Ministry, but the individuals involved were uncaring. They removed Ricky’s protective helmet, saying this is not normal (of course, that was the exact reason why he was in their care). Consequently, they were forced to call the police for assistance on a number of occasions because Ricky just could not cope without his protective gear. Once again the mentality of caregivers: fit in, or else!

Then we were introduced to the Brokerage Program. What a marvelous concept this turned out to be. All of a sudden, through this client-sensitive approach, a totally new and satisfying program was put in place that was oriented to the need and individuality of the person being served. Ricky, instead of pleading in the mornings, "Ricky stay home?" he now asked, even on weekends, "Tomorrow go school house?" For more than two years my son has benefited from this much more humane approach, and we have been grateful for every moment of it.

There is no doubt in my mind, for every dollar spent in the latter system, it is miles ahead of the former way of doing things, in client and guardian satisfaction.

Ralph and Beatrice

Our Christine:

Christine has met many challenges in her life from the very start when they said she would not live for three days. Her sheer determination has brought her through many trials that I will not document here. Christine overcame any challenge that came her way. But five years ago she was struck with another blow, dementia or Alzheimer’s disease changed our Christine from a happy productive person to someone we did not know. Her mental torture was horrible and she was put into Willow Clinic to determine the cause and try to stabilize her condition. Her prognosis was not good. As time went on we were told that Christine would not get any better and could only deteriorate. The advice was that she should not come home as we would not be able to handle her. After searching where Christine could go, it was determined that the Alzheimer’s home in Delta would be the only solution. Gary and I went to have a look, and although it is a nice clean place, our hearts broke. We could not see our Christine having that lifestyle. We were afraid that without the stimulation of a more normal life she would only sit and become more withdrawn and would be only with old people.

The agony we went through at that period is indescribable. We were determined that we must try and bring her home, but then what? Social Services did not have the means to help us. The only way they could help was by sending her away. There was no help for us if we took her home. About this time I received a letter about Community Brokerage and a meeting that was being held to take on some clients for a pilot project. At the end of the meeting they told us to go home and think about it. I did not leave until I made sure that we were signed on and that we would be considered. We and Christine were interviewed and luckily, accepted to be part of the pilot project.

When we went to the meeting at Willow to discuss Christine’s future. I do not know what we would have done without the broker, Glen’s steady influence and help. The meeting was very intense and emotional for us. We were told it was not a good idea to bring Christine home, that it was too much for us and that she probably would not know us, etc. We persevered and said it was our decision to try, and that we did have the support of Community Brokerage to put a program in place. At that time the Director said okay, but we want her out right away, we need the space. Another blow was that nothing was in place. But again, Glen stepped in quietly and said we will do it as quickly as possible, but you do have to give us a little time.

We brought Christine home and built a program for her. It was wonderful. We sat down and tried to work things out that would be best for her. A program was built where she was given in-home support so that we would not burn out. We got her a one to one support worker so that she could go out and do things she liked and try to stimulate her without stress. We put contracts out and were able to help in all aspects of hiring the people, etc.

To date Christine has again done what they said could not be done. She has made progress and has gotten better in many ways. She is in the position to determine her own programs and outings. She helps plan what she would like to do. She goes to work sometimes. She could not do any of these things without the support that was put in place for her with individualized funding. She has just decided that she would like to learn computers and we have enrolled her at Invergarry Learning Centre. She is enjoying life to the best of her ability. She has a quality of life that she certainly could not have had if she did not have this opportunity. We do not know what is around the corner. Everything is not coming up roses, we have our dark days. She now has a new development -- she has had a few seizures that are new. But we are coping and trying not to let anything stand in our way. It is one day at a time and each good day is a blessing. Each hug and happy smile from Christie is precious and treasured.

We were so happy that we could take Christie on a holiday. We took help along and went to Hawaii. What a wonderful time was had by all. Christie was bright and vivacious and enjoyed herself.

The pilot project was for us a life raft that we needed very badly. I do not know if we could have found the strength to fight and bring Christie home without their help and guidance. We are very sad that the project is closing and that others cannot benefit as we have.

Gary and Ingrid

We had never thought about Vanessa leaving home, it was always felt that Vanessa would live with us for a long time and during this time, hopefully, we would come up with a plan that would keep Vanessa well and happy when we were no longer around.

When Vanessa graduated form Terry Fox Senior School we accessed Social Work Services to help us setup some plans for Vanessa’s adult life (up to this point she had never had a social worker). During our meetings with the social worker, Community Brokerage Service Society (CBSS) and the pilot project was brought to our attention. We had an informal meeting with a member of the CBSS staff who filled us in on the concept of individualized funding and we expressed interest in becoming part of the pilot project. Although apprehensive at Vanessa leaving the family home, we acknowledged that it was in her best interest to gain the experience of living away from us and try to become as independent as possible.

Vanessa was linked up with two roommates and the process began. It took about a year to get a home set up with a service provider, and each family was wholly involved in decision-making with the help of our broker, whose professionalism helped us all feel good about the process. It was extremely important to us to have a say in our daughter’s future and the pilot project offered this opportunity.

Vanessa moved into a home with her two roommates in South Surrey and initially she settled down very well, enjoying the interactions with her roommates and staff. However, after about six months, due to a number of reasons, Vanessa became unhappy and it was decided that a move closer to her family would benefit her.

In September 1995, another home was set up, fairly close to the family home with a different service provider. At the present time, Vanessa has no roommate and occasionally has feelings of loneliness and gets scared. We constantly have to reassure Vanessa that we still love and want her as she has a fixation that we want to "get rid of her". However, on a positive note, she has great support staff who give her lots of encouragement and help her engage in different activities. Her interests have widened and Vanessa now takes an interest in keeping fit and visits a gym a couple of times a week, exercises at home, and goes bowling regularly. She has also learned to cross-stitch and has made a couple of projects.

We are very grateful to Community Brokerage Service Society for introducing us to the pilot project which we have found to be a very worthwhile experience. It is our opinion that this opportunity should be available to everyone with special needs.

Lynn and Doug

Life sketch in 200 to 300 words, what do we record, what do we leave out?

Born in Montreal, Quebec Jonathan was diagnosed as Autistic at an early age. He was also very hyperactive, friendly, happy, and easy going.

To control his hyperactivity, his doctor prescribed Ritalin. It was the only medication he took as he was a very healthy child.

Jonathan attended the "Berwick Centre" at U.B.C. from age five for approximately two years until he started special class in a regular school.

Our troubles started when social workers and teachers in the special class believed that they were better qualified to teach and train Jonathan than we, his parents were, and so ignored our advice as to Jonathan’s behavior and how to handle him. It was while in special class that the social worker and teacher determined that Jonathan was suffering from brain seizures, which we did not accept. Jonathan was taken to a neurosurgeon for testing and evaluation. The doctor’s report stated that Jonathan did NOT suffer from brain seizures, he was only showing resistance to what he was being asked to do.

Jonathan’s mother had taught him to read phonetically. He is an excellent reader and speller and found what he was being taught at school, boring. We took him out of regular school and placed him in Oakridge School for special children where he did well.

All this time Jonathan was taking Ritalin. About his fifteenth birthday we noticed that he was developing an aggressive attitude. When he finally attacked us in anger and had to be placed in hospital overnight, we found out about Ritalin rage. By then it was too late. This aggressive behavior was part of our daily life.

Except for an assessment at Vancouver General Hospital for three weeks when he was seven and nine, and then again at the Willow Clinic at Woodlands for three weeks when he was twenty-two (1992), Jonathan has always lived at home. Jonathan attended "Alternatives" on Victoria Drive where he was fairly happy. When we moved to Langley he was enrolled at an achievement center. He was very unhappy as he could not handle the incidents of the other clients. Jonathan is a people person and enjoys acting as a caregiver. It was while at the achievement center that we became aware of the Pilot Project and Individualized Funding. Jonathan was enrolled and accepted into the Pilot Project through Brokerage.

This was a turning point in our lives and that of Jonathan. Working with the staff at Brokerage was a real pleasure as they had only Jonathan’s growth and development at heart. Having a one to one caregiver and an individually designed program through Langley Association seemed to free Jonathan. Being a people person, Jonathan developed a real bond with those with whom he spends time. His aggression very rarely surfaces, his language is back to normal, he enjoys each day, and looks forward to Mondays when he goes to Invergarry Learning Centre. On Tuesday he delivers for Meals on Wheels, and Wednesdays he works at Willowbrook Mall collecting blue boxes and sorting out the goods for recycling. He has lunch at the Mall where he is well known and liked and then he also has his paper route. Thursday is a leisure day and on Friday he does his paper route again. Jonathan looks forward to each day and so do we. What will happen to his attitude if and when this project ends? We live in dread of not knowing how Jonathan or we will cope.

It seems such a shame that all of the expertise that was developed by the staff of Brokerage may be lost. We pray to God that this will not happen.

Basil and Myrelle

In 1991 a young man started going to an achievement center. For a while things were all right. Then things started to happen, his behavior started to change, and it became increasingly harder to handle him. Many forms of discipline were tried and nothing helped. At times he was accused unjustly for some of his behaviors which were provoked by others. Finally he was taken out of this program. His family found a person through brokerage to work with this young man, someone who truly liked him. The young man needed a program designed just for him, doing the things he liked, not what was planned by others. Since being a part of the pilot project his behavior has improved and he is a much happier person, working with a one to one support person.

Those in the community who have gotten to know him have seen the improvement in him. So please, as you look at cutting this program, think of all the people who benefit from this program and how much it is needed. Think about the benefits, not only for the young man in this story who is my brother, but for all the others as well.

Gail

Sonja was born in Germany in 1955 and was our first child. She had a normal birth, but we noticed she had problems sitting up straight when she was about 8 months old. We took her to an orthopedic clinic where it was discovered that her spine was not straight. She spent a few days at the clinic while a body cast was made for her to sleep in. There was an epidemic of measles at the time and Sonja came down with the measles and also developed pneumonia. She was very sick with a high fever.

After all this cleared up, our doctor who had come to the house each day, said that Sonja would be physically all right, but would be slow in school. We noticed she was slow at walking, but her speech development seemed fine. We did not see any major problems.

We applied to come to Canada in 1957 and went through a medical examination. It was determined that Sonja’s mother was expecting her second child so we could not come to Canada until the following year. We all passed the medical examinations and arrived in Canada in 1958.

Sonja started Kindergarten in Richmond, but it was during her first few weeks of grade one that her teachers noticed Sonja had difficulties. She was unable to sit still and had difficulty paying attention to what was asked of her. We were told Sonja could no longer attend the school. She would have to go to Crestwood School, a special school for the mentally handicapped.

We were in shock, our whole world broke down. It was a very difficult time. Our worst problem seemed to be the language barrier. We could not understand, we didn’t know where to go, what we should do. We were completely on our own, but somehow we carried on with life. Sonja went to school everyday and we took care of her.

Sonja had a brother two years younger and later on, a second brother was born. We now had three children to care for. We had no services or help; we never asked for anything and we were never offered anything. We were involved in Sonja’s care 24 hours a day. This had an impact on our social life. In the beginning we had friends, but over time, we didn’t see them anymore. We did things on our own as a family such as camping and going to the beach. We always had a two to three week holiday each year with the children.

Sonja attended Crestwood School until she was 18 years old, then went on to attend several sheltered workshops in Vancouver. After working for nearly 18 years and traveling by bus each way, to and from work, Sonja was expelled because of behavioral difficulties. This was a nightmare for Sonja and her family. We didn’t know what to do and even wondered if it was worthwhile to wake up the next day. A social worker from the Ministry was assigned, but he couldn’t help. Sonja was given a one to one support worker for a few hours each day so we could have a break. The future looked so glum.

Then, the pilot project was offered. This was the first time someone asked us what could be done. We had never received any outside help before. A broker worked with Sonja and our family to determine what services were best for Sonja. It took a long time, but eventually services were in place. Individualized funding is the best thing as Sonja’s services are made for her. This is the ideal for all people. With block funding people have to stay put whether they like things or not; you are forced to do it their way. With individualized funding people are free to change if things don’t work out. At one time we imagined that if we were unable to care for Sonja she would be put in an institution. For the first time we are pleased with Sonja’s services.

Albert and Madalena

My son, Russell is a thirty-five year old man who lives with two roommates in a home in Burnaby. He loves dancing, singing, exercise classes, preparing meals, and social outings. He goes to work everyday at the Burnaby Association’s Training Centre and is involved in a variety activities. One of his former support workers said that "Russell has incredible self-esteem, likes to take control of his own life, and be the boss". Well, that describes him all right.

Russell was born in Winnipeg in 1960 and is the second youngest in our family. He has three brothers and one sister. We moved to Ontario where Russell started school, and a short time later moved to Delta, B.C. Russell went to Sunbury School, then to Annieville School until he was 18 years old. He wanted to be like his brothers and sister and do the things they did, but they wouldn’t take him with them, so most of his after school hours were spent with me. I was kept extremely busy with five children, no outside help, and a husband who became unable to work after a back operation in 1973.

Russell wanted to have his independence and do the things he saw the others doing, like getting married, having children, and working in his own office. One time he even bought a ring for a girl he really liked, but another guy liked her too, and threw her ring away. Russell had paid $85.00 for it.

We were afraid to let him go off on his own, but he would just take off anyhow. He never got lost. He would disappear and then call me saying he was at such and such place, "come and pick me up." I would say ,"how did you get there?" ....."well, walk back home." On one occasion he refused to take the bus, and took a cab instead. I got a phone call to pay the bill. Another time he ate a meal in a restaurant, then said he had no money. Well, I got another call to pay for this bill. Russell had a fascination with the fire and police departments and would often call them. At times he would take off just to get a ride home in a police car.

As an adult, Russell attended programs at sheltered workshops. Although he was occupied during the day, there was little stimulation. It really was "glorified babysitting", and he seemed to "unlearn the things he was taught at home."

There were two attempts made by the Ministry of Social Services to move Russell to a group home, but both were unsuccessful. Promises were made for other living arrangements, but again, these did not materialize. Russell became very depressed, refused to get out of bed, and would often tear his room apart. His hopes of moving into his own place did not turn out. His expectations were dashed!

Finally, his social worker suggested Russell apply to the brokerage pilot project. After a lot of work, his broker helped get him into his present home that he shares with David and Ernest. A previous support worker helped Russell get used to his new home and environment. It is his home and he is involved in the running of his home. His door is always open to family and friends. Although he likes his home, Russell has always maintained he wants to "live in Winnipeg". It’s just one of those things. He doesn’t know anyone there.

To us, the pilot project has been a godsend. We don’t have to worry about him anymore. It’s been a lot easier for us. I was nearly 70 years old when Russell moved out. We are very disappointed the pilot project was cancelled. We feel there is no point in saying anything. They (Ministry of Social Services) will do what they want to do anyhow. We have a handicapped son and we hope that he’ll be OK.

Jean and Charlie

Ernest is an outgoing, social, 40 year old man who shares his Burnaby home with two roommates, Russell and David. The three men did not know each other, but after an initial adjustment period, found they are fairly compatible and get along well. Ernest’s home is just that---a place to call his own, where family and friends are always welcome. It is not a GROUP HOME. His broker, family and staff meet regularly to ensure this continues on an ongoing basis.

Ernest is involved in many aspects of running his own home. He enjoys grocery shopping and preparing and cooking meals. As Ernest prefers his home neat and tidy, he helps with cleaning up after meals. He also does his own laundry and is responsible for recycling all household items such as paper, plastics, cans, and glass.

Ernest works at "Mean Green", an industrial soap manufacturer, two to three days a week. He works at various jobs within the company and hopes to eventually be working four days a week. Both Ernest and his employer are mutually satisfied. As well, Ernest is a successful volunteer at the Surrey Food Bank on Wednesday mornings, while in the afternoon he works at FlexPac shredding documents. These jobs not only provide vocational satisfaction, but are a great asset to Ernest’s life from a social perspective.

Socially, Ernest spends time with his friends as well as quiet activities on his own. He enjoys bowling, dancing, music, and spectator sports such as hockey, football, and soccer. Ernest also enjoys walking, visiting the zoo at Stanley Park, movies, dining out, window shopping, and shopping for new clothes. He thoroughly enjoyed a trip to Hawaii in 1993 and looks forward to visiting Disneyland in the near future. Ernest is also a whiz at putting together jig saw puzzles and first demonstrated this talent when he was 6 years old. Today, he is skilled at fitting together 1000 - 2000 piece puzzles, some of which are framed and displayed in his home.

Ernest has faced many challenges to get to this point in his life. He was born in New Westminster on May 31, 1956, the third of four brothers. He was a healthy, happy, good baby. His youngest brother Derek was born on May 14, 1958. When Ernest was about 3 1/2 years old, he had a fall and hit his head on a cement floor. Shortly after this fall, he started having what was later diagnosed as epileptic seizures. When his seizures first started, his pediatrician told me it was nothing to be concerned about and that Ernest would outgrow it.

After a year of hearing this and watching Ernest get worse, I took him to the Regional Medical Health Officer. He was diagnosed with epilepsy and I was told that he should have been in the care of a specialist a year ago. The pediatrician was phoned by the Health Officer and asked to send Ernest to a neurologist. The neurologist hospitalized Ernest when he was 4 1/2 years old for one month for observations. I drove in from Port Coquitlam each day to visit Ernest. It was during this stay in hospital that Ernest withdrew and stopped talking.

During the next three years, the struggle to monitor Ernest’s seizures and try various medications was a daily task. He also suffered from bouts of pneumonia.

When Ernest was 6 years old he attended his first preschool. The next year Ernest attended a pilot project for preschool autistic children, through the Burnaby Mental Health Centre. Although Ernest was older, he was accepted into this program through my perseverance of daily phone calls, on behalf of Ernest, to the program director, and my need for help and support. I also drove Ernest to this program every day for 18 months.

Ernest next attended a school for the mentally handicapped in Coquitlam His needs were not met at this school, so I took him home. For the next 18 months Ernest was on a program called "patterning", which used 60 volunteers and was done four times a day, every day, in the home. This program was based on a method designed by the Philadelphia Institute for the Achievement of Human Potential. "Patterning" corrected a limp in one leg and stopped a stutter that Ernest had developed in his attempts at speech.

At this time, I moved to Calgary where Ernest attended Christine Meikle School for the Mentally Handicapped for two years. As he reached puberty, Ernest became physically aggressive.

I sent Ernest to a hospital in Edmonton for a six week residential assessment and diagnosis. I refused to take him home after the assessment because there were no services or help in the community to assist with the needs of children like Ernest. During that time, it was felt by some professionals that children with autism should be kept in the home, therefore, a psychiatrist with the Calgary Mental Health Centre refused to sign a form that would allow Ernest to be admitted to Michener Centre (an institution for people with mental disabilities). Also, a social worker threatened to take me to court and charge me with child abandonment because I refused to take Ernest home from the hospital.

From the hospital Ernest was sent to Panoka, an adult mental institution, for five months. He suffered and endured some pretty horrifying experiences. He was then sent to the Alberta School Hospital (Michener Centre) in Red Deer, Alberta where he spent the next seven years in the child and youth section. When he was 19, Ernest was transferred to the adult residential center where he spent the next 11 years. He experienced various forms of abuse while institutionalized and stopped talking again. Not long before he left Michener Centre, Ernest was physically abused by a staff person. Charges were laid and the individual received a $75.00 fine. If this type of crime would have happened to anyone in the community, the consequences would have been more severe.

Ernest’s Aunt Helen became his guardian for the last seven years of his residence in Alberta. In 1985, two brokers from the Community Living Society in Vancouver visited Ernest and his Aunt in Red Deer and drew up his first General Service Plan, a document that described his strengths, abilities, and needs. In the Spring of 1987, Ernest went to live in a home in Calgary serviced by the Calgary Community Living Society, an agency which included brokerage.

Ernest eventually settled in his own home with one, then two, roommates. He became involved in many social activities such as bowling, dances, concerts, weekend camping trips, and visiting other homes. He also had several work experiences including volunteering at the Calgary Food Bank. Ernest really enjoyed this area of work.

In March of 1991, Ernest chose to move to British Columbia where his immediate family lived. As the Pilot Project was not yet underway, he resided in a hospice setting in Chilliwack. This was not a pleasant experience for Ernest. It was a mini institution/workshop type of placement. Staff were not trained to work with individuals like Ernest, and therefore, did not understand or respond adequately to his needs. The expectation was that Ernest had to fit into "spaces" and "programs" that were not designed to meet his needs. Ernest was treated as a commodity with government dollars controlling his life, rather than as an individual with specific needs.

The success Ernest experiences today has not been without challenges, however, as in everyone’s experience, working things through, changes and growth are a lifetime process. Today, we all celebrate Ernest’s success and our original vision of Ernest being a contributing member of society, living in his own home, and participating in the community of his choice. This would not have been possible without individualized funding and a broker who was totally involved in the individual needs of my son.

Grace

David was a difficult child from birth. He had a club foot, crossed eyes, was spastic, wouldn’t (couldn’t) sleep, was allergic and extremely cranky. His original diagnosis showed slight spastic cerebral palsy, mental retardation and extreme hyperactivity. With no support networks at that time, life for everyone was a nightmare. We were told to put him on the list for Woodlands (a large institution for people with a mental disability)! Dave endured operations on his eyes, ears, and legs and many other invasive techniques. We searched for something to "make him normal". Perhaps there was a nerve problem or something. Somebody must have a cure.

At three years of age David was placed in Sunny Hill Hospital where he taxed their resources to the limit. Medication, restraints and a no-win attitude was the prognosis. We played the victim’s role looking for someone or something to blame -- our lives were falling apart. When he was five, David was diagnosed with autism. But what was that? It didn’t really matter anyway because by this time we had lost all sense of control. Little did we know that the program he was enrolled in at Laurel House would change the course of our lives.

David’s intensive one-to-one treatment uncovered a real person behind the facade we knew. The realization that he was sensitive, able to think, talk and learn was eye-opening. For the first time we found moments of joy with our son. The techniques we were taught and the support and understanding was empowering. We learned we could be in control again.

A family crisis however, forced us to put David in foster care. This was the hardest decision we ever had to make, but we made it anyway, and it proved to be the best one. The time apart helped us cut the " emotional umbilical cord" which kept us from moving forward. When he came back to us 1 1/2 years later, we viewed him with different eyes. We had a purpose, a plan, and a goal!

A child care worker, as well as respite services were provided by the Ministry. We learned to take advantage of the help. We decided that if we weren’t physically and emotionally strong, we couldn’t help our son progress. We chose one area only to work on at a time, ensured every core person involved with him was consistent and stuck it out until the lesson was learned. He had a personality. People liked him and children actively sought him out. He responded in kind. It was unbelievable!

We purposefully allowed David room to grow. We exposed him to a large variety of activities and places. We decided early on to "let him go", meaning once he learned something, he could have the freedom to put it into practice. He learned about road safety, then ventured beyond home; he learned about being taunted and bullied, then stayed away from certain kids and places; he learned consequences; he learned about caring and sharing. He learned and he grew and he wanted more. He became more independent, wanting to "be the boss" (staying home alone); wanting to do his job by himself with no one watching over him; wanting to go places on the bus by himself; wanting to decide for himself.

But he had come all this way in his 21 years to hit a dead end. No job, no prospects, no meaningful activity ("vegetating" at an uninspired day program with about 50 others), and the final curse--reverting to undesirable habits and traits out of frustration. What to do? Nothing. Where to go? Nowhere. His entire future seemed to drop into a big black hole of nothingness.

Then one day, a miracle! David’s Social Worker, Ken Kabool, told us about the Pilot Project -- a chance for David to explore his own needs and skills (not some bureaucracy’s generic version), the chance to pick and choose, the chance to live as "normal" people would with some control over his destiny; and for us, the power to still guide him through his choices by being his advocate. We actively embraced this wonderful opportunity.

Brokers supplied us with choices, set up contacts, accompanied us to appointments, work sites and homes and endlessly supported us and our son. This unique approach was a little overwhelming. Someone was actually going to bat for us, was gentle with us, was there for us. Energy was restored. THE SYSTEM HAD FINALLY COME TO ITS SENSES.

David thrived again. He tried out a variety of jobs in different work sites. He learned to say what he liked and didn’t like. He was excited about doing things, going places, learning new tasks, and was proud of his accomplishments. Each new achievement brought more self esteem, evident in his words: "I’m a good help, aren’t I, Mom?"

You sure are David, and don’t let anyone tell you any different. You’ve worked hard to come this far -- more than any "normal" kid could ever have accomplished in your lifetime. You were in the forefront of breaking down barriers and took your lumps for it, just as you touched many others by bringing out their compassion and eagerness to give. You have a lot more to offer and many more doors to open and explore.

Someone has deemed the Pilot Project a "failure", but you sure couldn’t tell it by David. David’s a success! The only "failures" David has seen are the backward-thinking "professionals" and bureaucracies who prefer the status quo. They look out for themselves by coasting along on his coattails instead of being creative. Afraid of change is what they are. But don’t tell David that because he’s not afraid of change. He’s a master at it--spent his whole life doing nothing but. Who should be learning from whom? Wish we could all be so proud of our lives as to say: "I’m a good help, aren’t I Mom?"

Lucille and Barry

Final Note: