Young adults who are intelligent and medically challenged have a right to live independently within their community. However, the government is not adequately facilitating this right, choosing to ignore this obvious need. They currently have no appropriate long-term care accommodations for the medically challenged. I’m a young adult with Duchenne Muscular Dystrophy (a condition that causes progressive muscle weakness), in a wheelchair and require 24-hour non-invasive mouthpiece ventilation. I depend others to provide my physical care and monitor my well being at all times. It’s discouraging to know that if I choose to live independently or if my parents were to become ill or sadly die; the government has nowhere suitable for me to live.
I believe the government should be providing residential group homes within communities across Ontario that meet the needs of the medically challenged. It should be a single detached house located within the community, where our families, friends, and social activities are found. This would meet our social and emotional needs. The environment would be a congregative setting that is non-institutional and is conducive to comfortable and safe living.
I suppose your asking yourselves who are the medically challenged? They are individuals who are medically fragile and/or technology dependent. Medically fragile people have a medical condition that can deteriorate rapidly, and therefore require constant monitoring by medical personnel. Technology dependent people are those who require technology such as tracheotomies, ventilators, and feeding tubes to maintain a physiological function.
It’s important to note that the mentally challenged are provided with residential group homes within their communities that meet their needs but are consistently denied to the medically challenged. Community Living, a well-established organization set up by parents of mentally disabled adults, operates hundreds of residential homes throughout Ontario for the mentally disabled. There are over six in Newmarket alone. Community Living is funded by the Ministry of Community and Social Services. Furthermore, it’s not just the mentally challenged who are provided appropriate accommodations but the elderly, who are offered nursing homes. Medically challenged young adults have been left out. We have no organization representing us that can advocate on our behalf.
The government believes nursing homes, hospitals, and on-call or scheduled attendant apartments are appropriate places for us! Yes, this is all the government of Ontario offers. So, if my parents died or became ill or even if I wanted to leave home these are my only choices. These are absolutely not suitable!
A hospital is obviously not suitable for our needs. Hospitals are not meant to be a permanent residence. It’s a place you want to avoid at all costs. The chances of picking up a staff infection such as MSRA, C. Difficile are great and are deadly, especially someone with respiratory difficulty.
A nursing home is for elderly people, many who are mentally incapacitated with dementia or Alzheimer’s. This is not a place for intelligent young adults. First, the staff is not equipped to deal with the complex needs of the medically challenged nor do they have the staffing level required to provide 24-hour continual care. Second, a nursing home does not fulfill our emotional and social needs. We need to “hang out” with people our own age.
Apartments with on-call attendants are definitely not adequate. The limited staff makes it impossible to deal with our urgent needs in a timely manner. The inherent delays of such a set up due to the fact that attendants are “on-call” and responsible for several people, would put me as well as others at great health risk. Our medical needs are such that health professionals have to be close by, monitoring us at all times. For example, residents who are trached are at significant risk. In some apartment situations risk reduction is attempted by wiring the failure alarm on to the ventilator of a resident to an “auto-dialler” which makes a cell phone call to an attendant in the building should their ventilator malfunction. In an emergency the auto-dialler must successfully call the attendant who must receive the call, access the resident’s apartment and correct the problem all within four minutes or the resident will die. In a monitored congregation (residential group homes) setting this would have been noticed and his or her life saved. These apartments can be lonely as you are living by yourself often far from family and friends, and would not meet our social and emotional needs.
It’s against the Human Rights Code to deny a group a service offer to a comparative group. Therefore, the medically challenged are denied a service offered to the mentally challenged. As section 1 of the Human Rights Code states: “Every person has a right to equal treatment with respect to services, goods and facilities, without discrimination because of…handicap.” Section 9, the general prohibition section, states that, “No person shall infringe or do, directly or indirectly, anything that infringes a right under this part.”
U.N. Convention on the Rights of Persons with Disabilities, with the government of Canada soon to be signatory, states under Article 19: “States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that…persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement…”
The costs involved to provide residential group homes would be minuscule. I estimate there are no more than 500 medically challenged adults in all of Ontario. We are a small group so to provide us with appropriate long-term accommodations would not be costly. There is actually a potential for cost savings. There are a significant number of medically challenged persons living full-time in the intensive care units of many hospitals because regular nursing staff are not trained to handle ventilated patients. Occupying a single bed in an intensive care unit costs the government approximately $3,000 a day, which equates to $1,090,000 annual!
One would think with these cost savings, the government would do something? Again we are a small group and therefore not a substantial voting block whereas the elderly or mentally challenged represent a significant voting block. After all who doesn’t have an aging relative or know someone in the family with an intellectual disability. What politician will concern his or herself to the issues of a very small percentage of the population? There is no advantage for them to be concerned, that’s not where the votes are found.
Even though there is no benefit politically, it’s the obligation of government to look after its population, especially the disadvantaged. The major political parties don’t seem to care that there is a gap in policy towards the medically challenged. It doesn’t bother them that many of us are living in hospitals or nursing homes. I’ve written Premier McGuinty and he thinks nursing homes and hospitals are acceptable. He has a record of fighting the disabled community on issues, which is clearly demonstrated by his refusal to continue funding a beneficial medical treatment for kids with autism past age six. He successfully fought the parents tooth and nail on the issue. We must follow the U.N. Convention on the Rights of Persons with Disabilities and make suitable independent living for the disabled a key focus. Society needs to be informed about this injustice and demand change. We must all step up and make our voices heard, so true progress can be made for the medically challenged.
David Brock's Blog 