First Posting "Together"

Today is my first attempt at "Blogging" at "Bloggville". I feel I'm in a foreign country and admit I haven't read many yet but thought this might be a good way to get the ball rolling. Last year I wrote a position paper on a topic that is near and dear to my heart.

You see 2 years ago I had to make the very difficult choice of whether or not to do a trachiostomy and use a ventilator. Contrary to what many beleivem I wanted to continue to live despited have been born with a severe neurlogical disability called Spinal Muscular Atrophy and finding out I was getting progressivly worse. Ironicly although the tracheostomy and made me feel a great deal better it had a negative impact on my "Quality of life" due to lack of $$ funding for an aide. I'm a sort of prisoner now limited to 3 blocks or rare outings with friends and family.
So here it is:

Together for Independence - a biography



This is what independence means to me:

Together, freedom through access and choice for full-participation.

Freedom to live my life as an individual and to make my own choices. To accept the risks and responsibilities involved and go where I want (access).

I need to feel comfort and reasonable safety within my own boundaries to fully participate in society and in my own life.

Michelle (February 2004)



During the mid-1970’s and 80’s, there was a trend to mainstream people with physical disabilities into community with able-bodied people. This especially is the case for children and young adults under the age of 60. Children were put into regular classrooms with peers their age and taught to be independent despite severe physical limitations. There was a provincial surplus and funding was easily available for programs to support this. During the mid-1990’s, there was a change in provincial government as well as a large provincial deficit. In turn, many cuts were made to programs and they were seen as a luxury. Often times, some people are not aware of the impact funding cuts have on the lives of disabled individuals. Media coverage on a very small percentage of cases where the system is abused distorts the reality of this situation.

I would like to take this opportunity to use my life story to demonstrate the nature of the problem and the consequences that these funding cuts have on the lives of the disabled population, especially those with progressive disorders.

I was 19 years old when I got my first apartment and attended The University of Alberta, studying education majoring in elementary with a minor in special education. It is a big step for most young adults, and one of the most exciting times in a person's life.

I hired my first employee who was to be my full-time attendant. She graduated with a residential aide certificate from Grant McEwan College. This girl was my first employee, and the key to my ability to live in the community. You see, I can't dress myself, wash myself, fix my hair or toilet myself. I couldn't cook my own meals or do housework and I couldn’t even cut my own food. I have a disease called Spinal Muscular Atrophy (S. M. A.), and received my first power wheelchair for mobility at the age of 11. I was able to do all these things because I had the means to hire a Residential Aide to help me., and yet I still considered myself independent.

Upon leaving university for health reasons, I began volunteering in a small private school that turned into a part-time job for four years as a teaching assistant. I worked in the classroom with a child who had Attention Deficit Disorder, and I later supervised the resource room and tested all elementary students as they completed a grade (they were all on individual programs and working at their own pace). There were times when I worked as a substitute teacher. Once I had to do a complete lesson plan for two weeks for a grade k-2 program after the new teacher quit on his second day. I was very active and enjoyed shopping, reading, going to movies, and loved going to the Edmonton festivals. Occasionally I even went to nightclubs, sometimes tearing up the dance floor with my friends on a Saturday night. I had my own van, so was quite free to come and go anytime I wanted.

“ Why?” you would ask, “How could I consider myself as independent when I could not meet the simplest of my own needs?” My secret is that I don't measure my independence by what I can’ t do. I measure my independence by what I can do. I have a brain, I attended University, learned how to organize myself and was taught to keep payroll. I “knew” how to run a household, to cook, clean, and manage my health. I knew how to shop (as every girl should). I even knew how to drive my van even though I couldn't do the driving myself. I had Residential Aides who could do these things for me. I would teach them how I wanted things done, and they would assist me.

It was very interesting when I had somebody that was not from the city drive me around. I had learned from a friend of mine who was in the same situation how to be a good “backseat driver”. I even got us lost occasionally but that was part of the process of learning to be independent. It was a partnership that would assist me to be independent for 13 years. These Residential Aides worked for me, doing things I wasn't able to do. I was able to live freely in the community and make choices for myself just like any "normal" person would.

In about 1991 or 93 (I can't remember the year), I became a preceptor for students from the Grant McEwan Community College. It was like a Mentoring Program where I would teach students, during their practicum, to complete their Residential Aide Certificate. It was the same program that my first employee had taken and I, in my first years living in my own apartment, had audited occasionally. This enabled me to share my knowledge and experience from the course in exchange for extra help. I didn't realize how important this would later become in my life. I still continue my partnership with this program to this day.

I strove for this independence very early on in my life. As a child, I never saw myself as disabled despite my family’s efforts to protect me and gently tell me I could not do something such as walk. I never gave up. At the age of 2-3, I remember persuading uncles and aunts to hold me up with my feet on the floor and walk me around and around. For a very short time I actually stood for a minute or two despite my primary diagnosis of S.M.A. I thought I could be a ballerina, like most little 3-year old girls wish.

Later on, around the of age eight, I convinced my physical therapist at the Glenrose School Hospital to let me attempt to use the tilt table to stand up, and later try using the parallel bars. It was no big deal to me as I never intended to be some sort of hero. I was just a child, and the equipment looked like fun. The physiotherapy room was always full of exciting new things (in my child eyes) and it looked like a playground to me. Going to physiotherapy was much better than recess (although recess was always fun, too…. I never really got to go to the playground for recess until I was put in regular public school for my sixth grade). My physiotherapist was able to persuade my orthopedic surgeon (bone doctor) to find funding for braces to walk with. Although I have never walked for mobility, it was an excellent exercise. I even had a pair of walking braces designed by NASA, filled with the air by an electrical air pump, which wasn't very practical had if I used them for mobility. I am sure that pump weighed as much as I did. I also had a special desk that I would stand in with a latched gate behind me to keep me from toppling over.

I, however, continued to grow and the funding to replace my braces ran out. I really wasn’t disappointed. Surprisingly, I guess I had already accepted it quite naturally for some reason. As it is still today, there is plenty of funding for children under 18, but as soon as a child reaches the age of adulthood there is no longer any financial support (*note: this is one of the reasons I am currently looking for funding). Nevertheless, my parents were always able to find plenty of resources from the Glenrose for various things needed to enhance my independence prior to this.

After one of several spinal surgeries, while recovering at The Glenrose School Hospital Children's Unit, I met a few boys who lived in a group home. I was still living with my mother and stepfather at that time and found that I was quite confined. I could not get out often as my parent’s house did not have a ramp. My mother had become physically worn out because she was finding it increasingly difficult to lift me. As well, her health was to starting fail.

I really admired these boys from the Catholic Social Services group home as they did everything “regular” teens did. They went to movies and concerts, camping and trips, everything that able-bodied kids do. When things got to difficult for my mom and me (I was the age of 13), I suggested to Mom that I try living in this group home. She was very concerned about dumping me somewhere as she was against ever putting me into an institution. I assured her I could learn to live in my own place with a Residential Aide, just as these boys did. I think it was harder on my mother than my self when I finally left.

This group home did not have an opening for me until I was about 15 1/2 years old. Some of my favorite memories are from this first house for young teenagers. Most of them came from outside the city to attend school in Edmonton. I remember it clearly: it was a large four-bedroom house with a vaulted ceiling, a sizeable patio, and all the amenities of an average home but adapted for people who use wheelchairs. I could drive in and out with ease on my own as there were no ledges or steps, as well as reach the light switches which were a new experience for me, a new freedom I had not had since I received my first electric powered wheelchair at the age of 11. I had such a blast! I finally was able to do everything I wanted to do and more. Of course my mother still remained my legal guardian, but our relationship was less strained and we became close again.

Later I moved into the adult rehab house. This was another house built on ground level, a duplex with low kitchen counters. I lived there with other young adults. This is where I had learned to give direction. For example, I would be given a chore that week, such as dusting or vacuuming. Because I could not do this myself physically, I had to ask someone to help me even at this stage in my life. I was responsible for telling them what supplies I would need and how to do it. I was usually the only female living in the house and I loved to cook. I would plan meals, arrange to get the groceries as well as instruct the staff on how to cook the meal. Sometimes I would even stir while using an electric frying pan. For example, I would make one of my favorite recipes, lazy man's stroganoff. (**Note: I mention this only because after moving to the GSS, initially the staff did not understand why I felt it necessary to give so many directions. They had little idea this is the way I had been taught, as it should be. Many staff had come from places where they were not used to residents giving directions. This is quite the opposite of what we were taught using the medical model.) The boys loved my cooking too! Getting those complements was pleasurable.

From there I moved into my own apartment. I suggested to Catholic Social Services that they establish a program in which a rehab worker would come out regularly to help support former residents living in the community on their own. I noticed while living at the group home that many former residents were having difficulty living in the community without support. Often they ended up in bad situations

While living in my own apartment, I decided on everything from apartment maintenance and cleaning to buying my own groceries. I received money from The Assured Income for the Severely Handicapped program (AISH) for my rent, groceries, clothing, etc. The Alberta homecare program would also deposit a certain amount of money in my account each month and I would hire [and occasionally fire] my own Residential Aides.

I adopted three lovely cats that I loved dearly. Pets love unconditionally and help fill the void that someone who is disabled feels from having no children. I continued living in my own apartment for 13 years. It was during this time that I attended University and later worked part-time in a private school. I was very happy with my life most the time.

There were times when there were issues with a caregiver as there often are in this field. I was able to pay just above minimum wage so many left for better paying jobs in care facilities; however most times were very good. I thoroughly enjoyed my life. Like I said, I had 13 years of living this philosophy, and love those years very much.

Nine of these years I lived in the Artspace housing co-op. The interesting thing about this environment was that it was an integration of disabled people and people who were not disabled. 30% of the units were accessible for someone in a wheelchair. This arrangement was kind of like owning your own apartment. You bought shares and were obligated to serve on the committees or boards that manage the building. The members made all the decisions in the co-op from maintaining the building to interviewing potential residents and staff. The co-op also owned a company that operated any homecare services provided within the facility. I was able enter this co-op very early on during its development stage. The building had not yet been built when my membership was accepted. It was very exciting to able choose the carpet and paint! I got to decorate and wallpaper to my heart's content. I loved building my nest, so to speak.

I believe I learned more living there than I ever did in my 3 years of University. I served eight years on the membership committee and four years on the Board of Directors for the co-op and S.A.I.L. board. I received a lifelong education in building management. I had many mentors and gained many leadership skills. Incidentally, my mentors still live there today.

Then again, in life things change and cannot always remain the same. I was later very thankful that I had made the decision to leave home as my mother died from pancreatic cancer during my first year of University. I was very grateful that I had settled and had some quality time with her before she passed away. Had I been living at home at the time of her death, it would have been very traumatic to me. I would not only have lost my mother, but possibly forced to move into an institution that she struggled so desperately to keep me out of.

There, however, is a certain limit to the amount of money that the government’s homecare program would allow me to have for this purpose and some of that funding had to go towards having care during the night, paying for someone to put me to bed and turning me during the night. In 1999, my health began to fail again so I had to make some very tough decisions. It was no longer safe for me to remain at home for so many hours alone, and it was too costly for the government to fund 24-hour homecare. The co-op was also no longer able to meet my needs. They had difficulty associating high medical needs with independent living.

At first, I attempted to recreate my happy times by setting up a group home. To me, it seemed to make sense to share attendants with other people with similar needs. As well we tried to incorporate the concept of the residents making all the decisions as we did in Artspace. Although the house was very nice, my roommates were not the best choice as their intentions were not always fair. Albeit, the situation had failed. I still, to this day, believe in a group home philosophy, as well as the concept of managing your own environment. In an organization such as The Good Samaritan Society, the arrangement would work extremely well.

It is unfortunate there were no longer many group homes, so I was forced to move into an Independent Living Centre, or what I thought was Independent Living Centre. I was told I can still do all those things I had done in the homecare program except I would no longer have a private caregiver. That seemed hard. Little did I know that I would be losing my independence moving into this Assisted Living Centre.

During the darkest times in my life I have been very lucky. Although I was baptized Catholic, my family did not go to church. I do remember quite clearly spending one year in Sunday school in a Pentecostal church during my second-grade year. My mother came from a Mennonite family and my dad was Catholic so I had a spiritually open mind. Also, my grandmother from my mom’s side greatly influenced my spiritual growth. Although she had lived in Swift Current, Saskatchewan, she helped me develop a strong faith from her letters and visits. I mention this here because I would now have to draw on my faith to help me get through this rough time.

I moved into the Good Samaritan Millwoods Center in January 2000. It was quite a shock. Not only did I have to give up my cats (I was originally told I could keep one… but this changed due to a new rule given by the residents) and my nice home. I had give up the most important thing of all: my independence.

I know ….I know ……“it could have been a lot worse if I had to move into a regular nursing home.” That’s the story Good Samaritan Society and everyone told me when I first moved in; that I “shouldn’t complain.” They were right to a point. If I had to move into a regular nursing home, which I almost did, I would have lost all my power of choice. I would no longer have been able to choose what I eat, how to dress, what time to get up or go to bed and when my guests should leave. I wouldn’t have much say about my medical care or routine. I thought it would not so bad, then boy, was I wrong!!! It was far from what I had always believed Independent Living meant and taught. This was not the same independent living that was always taught by staff at the Glenrose and the group home. I didn't realize that I was about to lose a piece of myself for a long time.

I soon realized this new assisted living centre had very little staffing. The staffing was so sparse I would often have to wait over an hour to go to the washroom after I rang. When I would ask for assistance to use the washroom I was often told that there was no time; they were going to do a bath. I could understand having to wait to have my bed made or my hair combed or my laundry done, but I found it very difficult, and almost torture, to wait to go to the washroom. There was definitely no time for staff to help me do the daily activities I used to do. And I was in shock over how little housekeeping there was.

During my first two years they [The Good Samaritan Society] continued to cut back any other resources from staffing to supplies. Staff had to do laundry for all of the centres. Cleaning and toiletry supplies were also cut back. Although it seems trivial, it impacted staff time immensely.

Things got from bad to worse. We were told that family should help out by doing laundry, cleaning rooms, etc. This was fine for some families as they want to be needed. It was very difficult for me as my family was so used to seeing me independent. They couldn’t understand why all of a sudden I was asking them for help. Somebody in my family thought I was just giving up because I was “spoilt” before when I had an attendant. That person didn’t realize the attendant was essential for my independence. This centre’s staff did not totally replace my attendant. I also didn't want to use up the short valuable visits from my family doing laundry. You see, many of my siblings have full-time jobs and work seven days a week. Some of them have small children, and spouses who can't drive.

Recreation here is a minimum. The Centre has only one recreation staff and a four-person bus. I was able to make small outings on this bus but then had to struggle on my own asking strangers to reach things in stores and get my drinks. I even had to ask strangers to assist me with my medication as I needed help getting it out. I, however, refused to ask strangers to help me with the washroom and resorted to waiting a long period of time using the washroom when I got home.

I had begun to slide into a deep depression as I had lost much of my life. I was told to put my name in for a volunteer. This was a good idea, but I was soon to learn that I would have to wait ten months. I drowned myself in prayer and books. There was a nun who regularly came and always brought me reading material. The library also dropped off books every two weeks. Although this was an escape, it was not an answer to my problem. I unceasingly asked God to help me get through this dark time.

Finally, in October 2000, some of my prayers were answered when a volunteer was found for me. Her name was Kathleen, an RN from the Philippines who was currently working as a nanny. I didn't realize how much personal care I lost. I wasn’t neglected by any means; I would just get very basic care. My hair and nails were unkempt. With Kathleen, I was finally was able to organize my room. This was very important to me. I will give you a good example. Staff was doing all the laundry at that time, so naturally it wasn't always put away carefully. It wasn't because they didn't want to; they just didn't have enough time. In the morning when I would get up I had to wear whatever I could find. Other times I would ask staff to help me get something but they did not have time to help me find what I was looking for. I was lucky if my former stepmother or aunts would help me cleanup. But this would not last too long.

I didn't realize how low my self-esteem had reached until this cheery little Filipino lady started playing with my hair and painting my nails. I started to feel good about myself again. Sometimes we would go out for coffee or shopping. She came every weekend for a whole year, and very rarely missed a day. Although this was not quite the same situation I had in my own apartment, it was a great relief to know that she would be there on the weekends. She later moved on and eventually got a job in the Centre. I still continue getting volunteers to this day, relying on them to help me keep some of my independence. I think they help tremendously, without even knowing, to keep me from slipping into those dark times again.

This, however, is not the be all and end all answer to solve my problems. Volunteers are only able to contribute a few hours per week. They are also obliged to follow very strict policies and are only able to do certain tasks. They can do none of the tasks in the job description of the nurses. Some of the things they are not allowed to do include laundry, assisting in the washroom (which is a necessity for me on outings longer than two hours) and other regular personal care. Volunteers are also very hard to find. More people are working two or three jobs as well as keeping families. There are very few student nurses who wish to volunteer. Occasionally there are programs where students must have volunteer hours as a prerequisite; however, once they have the required number of hours they move on. The things they are able to do for me are very valuable and must not be underestimated.

Again, as I have said before times changed, residents and staff tried to express their concern over staffing cuts. In the fall of 2003, the final cut was made to dispose of an overnight sleeping respiratory therapist position. We called a large meeting that was attended by administrators from the Good Samaritan Society. The tension was high and the outcome very disappointing. Much of the blame was also on the Capital Health Authority as they provided all funding for staffing.

Its too bad prayer can be answered in sad ways. Finally on December 13, 2003, there was an accident in which a man died when he got disconnected from his ventilator while alone. There was a large meeting prior to this where the residents protested the staffing cuts. This accident caused The Edmonton Capital Health Authority “to wake up and smell the coffee” so to speak. The media attention finally got them too. A great deal more staffing for the Clayton Court (respiratory wing), especially for the trach and ventilated residents, was added.

Recently, our overnight Respiratory Therapist was replaced with a full-time wake position. Many nurses were happy they could now provide the care they had always wanted to provide for the residents. Relations between staff and residents finally started to mend. Staff are now able to provide an excellent level of care (in most cases).

Unfortunately, funding was not provided to assist those who have trach or ventilators go out into the community. When the Good Samaritan Society accepted patients with trach and ventilators at the old Abreheirt Centre, residents often went on many outings with staff using their own bus. This, however, changed after the move to the new Millwoods Centre in October 1996 and all the cuts following in its wake.

The extra staff was a relief, not only to others, but especially me. Too many residents (and their families for them) were afraid to go to sleep for fear of choking or not being able to breathe. It was always a fear that one day I too would be in that same situation. I knew I would be on a ventilator one day. I tried to put my fears in the back of my mind but they were a reality that was ever-present since my primary diagnosis at the age of two. I had long outlived the life expectancy of five years that was given to my parents.

In November 2002 I began to experience severe fatigue and muscle weakness. Consequently, I questioned my breathing. I began seeing a doctor specializing in pulmonary disorders. I found out that I had increasing carbon dioxide in my system, causing my disease to progress.

In February 2003 I was admitted to the University of Alberta Hospital. I tried a bi-pap machine but this proved to be impossible because to breathe at night, I was already using oxygen; hence, I was given the choice of using a ventilator. After discussing this at great length with a close friend who was already on a ventilator, I decided it would be best to get the ventilator before I entered total respiratory failure. I know this seems like an extreme measure, but I was more scared of respiratory failure and not being able to breathe in an emergency than I was of having to be incubated, which would have been a lot worse. I knew that my life was worth the trouble as I have always been a survivor and I don't believe in “packing it in”……yet. I’m not sure my family members would have done the same thing. But I wanted to live.

It is at this point that I should mention the importance of the person with the progression disorder should always have a personal directive in place in and only in the case that the individual is not able to speak. I have my father and my best friend , who is like a sister to me listed as my agents. There is much information out there regarding reading a personal directive and one should be cautious and informed when making a decision.

Oh my gosh! It was quite an ordeal. But after a few months of recovery (I did lose quite a bit of motor control in my arms) I started to have all this energy. I haven't had any like that in many years. My mind was clear, although it always was sort of… I just wanted to go out and live my life, but all of a sudden there is a ton of red tape. I could no longer ride the Centre bus without an attendant. At the same time, they are unwilling to provide me with a caregiver to go out with me.

Everybody said “How about a getting volunteer for outings?” That, however, is easier said than done as they are very few volunteers to begin with. Trends in society show that more people are working longer hours with very few days off. The Centre said they were willing to provide training for family, friends, volunteers, or students, yet there is a large reluctance to do this since there have been many law suits to the Centre regarding residents on ventilators. I was so disheartened. The irony is that despite my tracheotomy and ventilator, I had all this energy. And now it is difficult to find people to take me out. It was hard enough losing my independence when I first moved here but I now lost what little I had left.

I find it almost impossible to ride our Disabled Adult Transportation System (DATS) as I get extreme fatigue and pain while riding. I have only been able to use it for very short distances. As a result, I find it necessary to maintain my own van. Family members have been able to fund the insurance on it for now, although I am not sure for how long. I still have great difficulty finding anyone to take me out as family members work long hours and many jobs.

Fortunately, the Grant McEwan Community College occasionally allows students to take the Volunteer/Family Emergency Trach Sectioning and Bagging course. It enables me to go out occasionally, mostly for special occasions such as Christmas or Easter. The student is also very valuable to me for helping me organize my environment and do tasks that I am unable do with staff. This provides me with temporary independence. I have ”a light at the end of the tunnel” in terms of regaining some of my independence I once had.

So what are the answers to these problems? I am currently advocating on behalf of people with trach problems as well as other respiratory conditions. I currently work for a couple of organizations: the A.C.C.D (Alberta for the Committee of Citizens with Disabilities) and the MDAC (Muscular Dystrophy Association of Canada). Within my residence I am president of the Resident Family Committee (RFC) and sit on the Advisory Council of Resident and Family members for the Good Samaritan Society. I still maintain my van so family members or friends can drive me when they are available.

First, I need to address the temporary nature of the problems. There needs to be some sort of resources in order to hire staff who could be trained to handle situations that a person with a ventilator might encounter when on an outing, e.g. suctioning or bagging until an ambulance arrives. This will enable individuals to participate in the community not only for practical things such as banking or shopping but also for leisure and recreation. Some might even be able to volunteer or work if they have this support. This situation should be dealt with first as it is very difficult for someone on a ventilator to be confined for this reason for prolonged periods of time. This is especially necessary for people without family or their family does not have the time to help. The Millwoods Centre currently has four residents who would benefit from this solution. It is certain that in the future, there will be more people who will use a ventilator.

Residents should be empowered by being part of the decision-making process within the Centre where they belong. Anybody who wishes to have some voice in operating the building, hiring staff and policymaking could contribute in some way, either by working directly or appointing a representative. When the Good Samaritan Millwoods opened its doors, it was assumed the residents, staff and management would all take part in all decision-making. This would include the operation of the building, hiring of the staff, policymaking and any other major decisions of the Centre.

After the year 2000, G.S.S. Millwoods went through major management changes. Currently, the management believes that they know what's best for the residents better than they do, and that the residents don't have the education or medical background to make the decisions.

Most organizations, including the United Nations, believe that people with disabilities should be able to participate fully in their day-to-day life and society in general. These decisions should be reinstated in the Millwoods Centre as most people with progressive disorders currently have very little power in their life. They should be able to have as much decision-making power as possible. The Centre is created for the residents, not merely to satisfy the demands of the Capital Health Authority and pressure from the media.

When residents, current staff and management work together in the decision-making process, it creates a more holistic view of the task at hand and all aspects are taken into consideration. This is also in line with the original assisted-living philosophy based on the social model of care on which the Center was founded. Higher medical needs don't necessarily mean that we have to resort back to the old medical model.

There also needs to be more staff on site to assist residents with daily activities such as organizing rooms and recreation activities like crafts and hobbies. A better idea would be for residents to have access to funds to hire their own private attendants if they cannot afford to do so on their own, making them as independent as possible. This would solve both problems. We can longer rely on volunteers to fill this role.

As statistics show, there has been a steady decline in volunteers throughout all of Canada. Many people can no longer afford to give free time as many family members have two or more jobs at a time. There is an assumption that baby boomers now retiring have much time on their hands and wish to volunteer. This is a myth. This might be so within senior centres. Most seniors would prefer to volunteer with people their age or slightly older than themselves.

There is a large gap of volunteers who wish to work with younger people with physical disabilities. Also, people with progressive disorders do not fall within the same category as someone with palliative care issues. It is very difficult to find unpaid labor. As much as I appreciate my volunteers, they are only able to contribute two hours a week at the maximum. It is unusual for them to be able to contribute beyond that. This is not enough for disabled people under the age of the 65.

Secondly, we need to apply this to other people with disabilities residing in the Good Samaritan Centre who have other health concerns that prevent them that from partaking in community life. They also need access to a companion to assist them outside the Centre. People with disabilities often are very capable of putting back into the community but are unable to or are afraid to do so because of health reasons. It also fatigues a person with health concerns when they are forced to struggle in shopping centers or movie theatres without somebody to rely on for help.

There also needs to be more of a focus on rehabilitation and occupational therapy for someone with a disability. Currently, only minimal occupational and physiotherapy are provided to centres. The occupational therapist at the Centre spends most of her time ordering equipment for new residents. There is no time left to spend one-on-one with a resident to develop motor skills.

All too often, people are merely housed, barely meeting the physical needs of a physically disabled person. In Alberta, there is more funding for a person with a developmental disability than someone with a physical disability. This is due to the nature in which funding is provided. Changing the way funding is delivered also means more dollars. Hence it is cheaper to ignore rehabilitation for someone with a long-term illness as well as provide equipment necessary for this person’s state of mind.

There also needs to be more funding devoted to providing assistive devices such as specialty telephones, computers and environmental controls. Again the occupational therapists would be able to spend time with the residents and work with them with these tools. Unlike me, many people do not have the background provided by the Glenrose Rehab facility. Many people going directly from home to the hospital don't have training for independent living. The government doesn't generally spend resources on those considered to have progressive illnesses.

Thirdly, the need for alternative housing for individuals with progressive disorders need to be addressed to enable them to live in the community. If the individual wishes to be independent from their family group homes are a good way of providing care to this type of clientele. Although it is only slightly cheaper than providing care on a one-on-one basis, it keeps the person living in the community. This arrangement enables them to leave their homes for outings, whether for business or pleasure. Staff are able to go with more than one person at a time, and occasionally on a one-on-one. There currently is a group home in Calgary set up in such a manner that individuals with neuromuscular disorders are still able to remain at home even if they require a ventilator.

Funding and adequate and support should be available to those individuals who wish to remain at home with their families. Often , people with progressive disorders , have to leave their home environment , as it becomes a hardship to their families if they should stay. Many people do not want to become a burden in the later stages of their disorder. Support should also be available to thd immediate family , who have two travel long-distances to see their loved ones with progressive illnesses such as the ALS, Muscular Dystrophy or Multiple Sclerosis. This could be in the form of a tax rebate for mileage or other travel expenses , such as lodging.

The Good Samaritan Society and the Capital Health Authority have come a long way in bringing back care that was once provided to people with disabilities, such as myself. With some short-term funding and long-term planning, they will be able to provide a more holistic way of delivering care to people with progressive disorders. They should not only look at the physical needs of the person but also the social, intellectual and emotional needs which includes the individual be able to remain part of a community where they belong.

Many people with progressive disorders such as myself wish to live independent lives and not merely have their physical needs met. This, however, needs to be a partnership with the individual, their families, their caregivers and the society in which they live. We want quality to our lives , and not just our medical and physical needs. We also want the government to recognize that we were(are) equal citizens (in)our country and are(our) province. (T)this however is going to take a great deal of work from all of us especially considering current trends in government spending. I really hope that my story indicates to you the needs of a person with a disability affected by these cuts in programs.