The Voice of the Cerebral Palsied of Greater Vancouver (VCP) has been a non-profit society, under the Societies Act of British Columbia, since 1977. The VCP is a self-help support society formed in the firm belief that Cerebral Palsied (CP) adults are the only experts on their own needs and aspirations. The VCP is controlled and operated solely by adults with Cerebral Palsy and other birth defects. It is the only organization in B.C. which truly represents Cerebral Palsied people. The VCP was formed to provide a continuum of services and programs necessary to assist Cerebral Palsied individuals in developing the skills and confidence to assume a productive and meaningful role in society.
The core belief of the VCP is that people with CP must be empowered to control their own lives. One of the areas the VCP is actively involved in is advocating for improved attendant/homemaker care because the majority of adults with CP require such services. A comprehensive overhaul of the entire system is urgently needed, including the way service is delivered, the care assessment, broadening the mandate of Continuing Care and ensuring that this mandate is enforced, and separating care for people with disabilities from that of seniors and the convalescent.
Because the vast majority of adults with CP require some form of attendant/homemaker care, people within the CP community are greatly affected by the quality, or lack thereof, of the care. Currently, people who are living on their own (i. e. not in group homes) receive their attendants/homemakers through agencies. These agencies hire attendants/homemakers and then assign them to their clients. The clients may or may not have a say in who does their personal care. Even if they do express a preference for a particular caregiver there is no guarantee they will get that person. Furthermore, if a client decides that s/he does not want a particular attendant/homemaker for whatever reason, including incompatibility or incompetence, s/he has no assurance of getting rid of the caregiver. In addition, because the agencies work out set times to provide service with their clients, it is often very difficult, or impossible, to change these times, especially at short notice. Thus clients' lives must revolve around their schedules with the agencies. While residents in group homes have greater flexibility in their hours of care because they have 24 hour coverage, they also have limited say in who provides them with care. To truly live independently, the clients, not the agencies, must retain the ultimate power to hire and fire attendants.
The present situation totally disempowers the clients who are the ones directly affected by the quality and competence of the caregivers they are assigned. Clients must be the ones who determine who their attendants/homemakers are. Each client has his/her own unique needs and preferences which must be met. For example, a person who has a speech impairment may prefer having caregivers whose first language is English. Not only is the working relationship more pleasant because it is much easier to communicate, but in times of emergencies the caregivers do not have to overcome language barriers to take quick, decisive action. Another example involves a female client who requests female, as opposed to male, attendants/homemakers because she feels more comfortable with women helping her with personal care. Another client may place a high priority on having caregivers who can cook really well because s/he enjoys eating well-prepared meals while
another client, seeking companionship, requires friendly, outgoing attendants/homemakers. Yet another client may be a night owl and therefore requires attendants/homemakers who will work late. Each person's needs and requirements are legitimate and must be incorporated into the selection process.
Currently these agencies receive large amounts of funding from the Continuing Care Division of the B.C. Ministry of Health based on the number of hours of care they provide to their clients. The funding covers the costs of running and staffing the agencies as well as the salaries of homemakers/attendants.
The present system is extremely costly and inequitable for a number of reasons. A large chunk of the funding goes towards staffing and running the agencies, with the attendants/homemakers only receiving modest salaries. (The agencies receive approximately $24 per care hour while the average hourly wage for homemakers/attendants range from approximately $7 to $12.) Furthermore, the agencies do not bear any direct consequences for failing to meet the needs of their clients. Until a new system is in place, the agencies must be forced by the Ministry of Health to financially compensate clients for negligence, incompetence and/or failing to provide care. Clients must also be financially compensated for the time they spend training attendants/homemakers. This training benefits the agencies which now get their staff trained at little or no cost while it takes up their clients' time and energy. Finally, the clients who are most directly affected by the attendants/homemakers, have little or no say in who they receive.
Those people who require attendant/homemaker care must receive direct funding to either hire their own caregivers or purchase services from the agencies of their choice. This approach will have a number of benefits. The clients would have the ultimate say in who they hire and fire. The clients would also have greater flexibility in when they can have service because they are directly involved in the hiring process and set the terms of employment. Because individuals managing their own care do not have the overhead costs of the agencies, the cost savings could be passed on to the salaries of their caregivers or spread over the salaries of more caregivers.
The agencies will be forced into serving their clients better for a number of reasons. The clients and agencies must sign contracts which clearly state the service obligations of the agencies to the clients. Clients could then take action for breeches of contracts. In addition, clients have the additional lever of withdrawing their funding and going to other agencies if they are unhappy or dissatisfied. Thus the agencies are directly accountable to the clients, and not to Continuing Care.
Although the "Enhanced Consumer Participation Program" exists enabling the participants to have a greater say in who gives them care and when, few people participate in it largely because it is not widely publicized by the agencies and Continuing Care. Furthermore, the agencies still have the ultimate say in who gets hired and fired because they, and not the clients, receive the funding.
The funding each person receives must be based on the number of care hours each person requires per month based on a care assessment. The cheques could then be sent out weekly, bi-weekly or monthly.
The system that Long Term Care uses for personal care assessments must also be changed. Currently, the categories for the different levels of care are based on the needs of people with spinal cord injuries. Paraplegics and quadraplegics are relatively easy to categorize based on which vertebrae in their backs or necks were injured. Hence, their abilities are relatively straight forward to assess.
People with CP do not fit into neat categories. Because different areas of the brain are affected to different extents, no two people with CP are exactly the same. Furthermore, many people with CP also have other additional disabilities such as blindness, deafness, epilepsy, learning disabilities, dyslexia and/or mental retardation, all of which affect the amount of care they require as well as make it difficult to categorize their care level using the above model. People with CP also exhibit traits which are not commonly associated with a severe disability. For example, a person with CP who can walk but who cannot effectively use his/her hands to do personal care and housework may have difficulty being categorized as extended care. Even though s/he does not need help transferring, s/he needs extensive personal care including to be fed as well as help with home making. However, the people classified as extended care are typically in wheelchairs and need help transferring, but many who have the use of their hands can feed themselves. Because this person with CP does not fit into this description, s/he is perceived as being less disabled then s/he actually is.
The hours of care each client is assessed must be permanently attached to that person. For example, if a client marries someone who is either less disabled than s/he is or who is able-bodied, than that client may lose care hours. This situation places more stress and strain on the partner and may be a factor in not marrying in the first place or ultimately separating and divorcing. Instead attendant/homemaker care must continue to be provided so that the client can be as independent as possible and feel like s/he is contributing to the relationship and not being a burden. Another example involves clients' hours being cut, even though their care needs remain the same, in the name of economics. Cutting hours is false economy. In the short term money may be saved. In the longer term the stress of coping with less help can cause some clients to end up in extended care or psychiatric hospital wards, thus costing tax payers extra money.
The personal care assessments must be based on both clients' lifestyles and on what they can or cannot realistically do. Attendant/homemaker care must enable people to be involved in activities which they find personally satisfying and rewarding. Ideally a balance must be struck between having clients do as much as they can for themselves on one hand, and having caregivers do things which clients find difficult to do on the other hand. As a rule of thumb, attendants/homemakers should do things which would take their clients an inordinate amount of time and energy to accomplish, thus freeing up their time to do other things. For example, by doing clients laundry, attendants/homemakers can free up their clients' time and energy to pursue other activities such as working, going to school, or doing volunteer work. What is the point of clients struggling to do their laundry in three or four hours when caregivers could do it in one hour?
Attendant care must also go beyond providing personal care and house keeping if it is to truly assist people to live the types of lifestyles they choose. It must enable people to do things they would not otherwise be able to do. Attendants should be able to do such things as driving a client's vehicle for him/her, assisting a client at work or school, accompanying a client on vacation, and/or helping a client eat out at a restaurant when s/he is out on a date. This type of help enables clients to not merely get up and dressed in the morning, get fed and then go to bed at night, but also to participate in activities which able-bodied people take for granted.
One of these common activities is having sexual relationships. However, adults with severe disabilities may find it difficult or impossible to have sexual relationships on their own. Long Term Care must explore assisting disabled people to have sexual relationships through such things as providing sexual surrogates who are legal professionals who either assist two people with disabilities to become intimate or perform an intimate act for someone who cannot do it for him/herself. Sexual surrogates are used in such cities as San Francisco. Another option used in European countries such as Denmark, allows social workers to assist people with disabilities to access the services of prostitutes.
As can be seen, attendant care must take into account people's over all needs and lifestyles. To better do this, a distinction must be made between people with disabilities, particularly those with CP, and seniors and the convalescent. People who have CP have a static disability which theoretically does not change over time. However, it does affect people's physical abilities as they age. Their lifestyles may also change over time. For example, the abilities, activities and lifestyles of people at 20 will be quite different than when they are 50 or 60. Consequently, they must have care which adjusts to their changing needs. The convalescent, for example those recovering from surgery, need only temporary help as they steadily regain their ability to function. The seniors who require care generally are less active, mostly due to poor health, than people with disabilities. These seniors have lead a full life and are entering their twilight years whereas people with CP are trying to expand their abilities and opportunities. As these seniors age they also require more care. Thus these seniors' care would mostly consist of personal care and house keeping. Separate programs must be established for each of these groups to cater to their distinct needs.
Because the ultimate goal of attendant/homemaker care is to assist people to live independent, fulfilling lives, a comprehensive overhaul of this care must be carried out making it much more responsive to the clients' needs and desires. To do anything less would be to continue to deny people with disabilities the right to control their own lives - a right which the rest of society takes for granted.