Living Independently and Being Included in the Community
- Publish Date: 2011/08/13 - (Rev. 2019/01/12)
- Author: Wendy Taormina-Weiss
- Contact : Disabled World
Outline: Nations that have signed the Convention on the Rights of Persons with Disabilities (CRPD) have recognized the equal rights of every person with a disability to live in their own communities.
Nations that have signed the Convention on the Rights of Persons with Disabilities (CRPD) have recognized the equal rights of every person with a disability to live in their own communities.
These nations have recognized we have choices that are equivalent to others, and have stated they will take measures that are both appropriate and effective to facilitate the full enjoyment of our rights as persons with disabilities to full participation and inclusion in our communities. Nations such as America, who have signed the Convention, have stated they will ensure our rights through a number of ways.
America and every other nation that has signed the Convention will ensure that persons with disabilities have the opportunity to choose our place of residence. These nations will ensure that we have the opportunity to choose both where and with whom we live on an equivalent basis with others. America and other nations that have signed the CRPD will ensure that we are not obligated to live in a particular living arrangement.
The year 2002 in the United States of America found the White House putting forth a decree. The decree stated,
"...segregation of qualified individuals with disabilities through institutionalization is a form of disability-based discrimination prohibited by...the Americans With Disabilities Act..."
Placement of an individual with disabilities into an institution forces them to adapt their needs to the needs of the institution, essentially turning the individual into an inmate. As an inmate, the individual with disabilities finds the staff deciding their needs at any given moment to be what is most pressing. The individual with disabilities cannot even decide when the desire to get up in the morning, or when to go to bed at night - the staff makes that decision for them. In far too many instances, the individual with disabilities cannot even decide when they desire to use the toilet, meaning criminals in prison have more freedom.
The result of institutionalization of individuals with disabilities is often one of the individual becoming frustrated, depressed, and passive.
Research has demonstrated that institutionalization causes, 'hospitalism,' a condition that involves a decline in not only initiative, but skills, physical and mental health. The very existence of institutions makes other people in society think persons with disabilities are different. Even more damaging, institutions make us as individuals with disabilities ourselves think we are different, creating self-fulfilling prophecies.
As Prof. Adolf Ratzka stated;
"Independent Living does not mean that we want to do everything by ourselves and do not need anybody or that we want to live in isolation. Independent Living means that we demand the same choices and control in our everyday lives that our non-disabled brothers and sisters, neighbors and friends take for granted. We want to grow up in our families, go to the neighborhood school, use the same bus as our neighbors, work in jobs that are in line with our education and abilities, start families of our own. Just as everybody else, we need to be in charge of our lives, think and speak for ourselves."
There are major corporations in America whose sole purpose is the institutionalization of seniors and people with disabilities. When I think of the increase in the numbers of younger people with disabilities who are ending up in these corporate institutions, I wonder just how seriously America is taking its dedication to the Convention on the Rights of Persons with Disabilities.
Residential and Community Support Services - Personal Assistance
Nations that have signed the CRPD, such as America, will ensure that persons with disabilities have access to a range of not only in-home, but residential and additional community support services. These nations will ensure such services include the personal assistance we need to support both living and inclusion in our communities, as well as to prevent segregation from our communities or social isolation.
The people who have been making disability legislation in America are largely non-disabled, if not entirely, in far too many instances. There are; however, a number of people with disabilities who have created a policy in relation to us, personal assistance and community supports. They have defined, 'personal assistance,' as well as what it means.
The policy of personal assistance they suggest through, 'Model National Personal Assistance Policy,' is designed to establish the right of people with disabilities to direct payment for assistance services, for as many assistance users as possible. It is also their policy to enable as many people with disabilities who use assistance to exercise the degree of control over the services they prefer, at any given situation in their lives, through a couple of means.
The means in the policy include the provision of assistance to users with purchasing power; something which in turn creates a market for assistance services with a variety of service providers who present unique service delivery solutions. It also involves the elimination of monopolies - whether they are public or private, where the provision of assistance services is concerned.
Defining, 'Personal Assistance'
People who experience extensive disabilities depend upon assistance from other in their activities of daily living. These activities can include:
- Planning the day
- Personal hygiene
- Assistance during leisure time
- Assistance with communicating
- Cognitive or psychosocial support
- Work around the inside or outside of their homes
The term, 'personal assistance,' means that funding and services follows the person, not the service provider. It means assistance users are free to choose their preferred degree of personal control over the delivery of services in accordance with their particular needs and capabilities - as well as their preferences, current life circumstances, and aspirations. The range of options the person has in relation to personal assistance includes their right to custom-design their own services; something that requires them to decide which service provider is to work, with what tasks they will work with, at what times, where, as well as how.
A policy of personal assistance, as well as additional solutions, enables and individual with disabilities to contract the services they desire from a variety of service providers.The individual may also choose to hire, train, supervise, schedule, or - if the need should arise, fire their assistants. To be plain, 'personal assistance,' means the individual with disabilities is the customer or the boss.
It is important to note that children or other individuals with psychosocial or cognitive impairments may require supports from third persons with the functions listed. The term, 'personal assistance,' cannot be used for service delivery solutions where where both housing and assistance with activities of daily living are provided in one inseparable package - such as in nursing homes.
A nation's personal assistance policy must be combined with a policy of general barrier-free construction in order to phase out residential institutions. A nation's personal assistance policy must enable people who experience extensive disabilities to live in their own communities with both full participation and self-determination.
Availability of Facilities and Services
America, as well as every other nation that has signed the Convention on the Rights of Persons with Disabilities (CRPD), will ensure that community facilities and services available to the general population are also available on an equivalent basis to us as persons with disabilities. These nations will ensure these facilities and services are responsive to our needs.
The United States of America has the Americans with Disabilities Act (ADA), an interesting Act to say the least.
According to the ADA, State and local governments may not discriminate on the basis of disability. The ADA requires that every service, program, or activity be operated so that when it is viewed in its entirety, it is readily accessible and usable by individuals who experience forms of disabilities. Further examination reveals this is true unless; of course, it would result in a fundamental alteration of that service, program, or activity - or in an, 'undue financial,' or administrative burden. The ADA is absolutely riddled with holes; for example:
- One car per train must be accessible
- Newly constructed transit facilities by public entities must be accessible
- Newly constructed State and local government buildings must be accessible
- Public entities have certain obligations when acquiring or re-manufacturing used vehicles
- New buses and rail vehicles acquired by public entities for fixed route systems must be accessible
- New vehicles acquired by public entities for demand responsive systems must be accessible unless the system provides individuals with disabilities a level of service equivalent to that provided to the general public
Isolated examples? Not hardly.
Even in the same section of the ADA there are further examples of the, 'make things accessible, but only if,' clause:
Public entities operating fixed route bus, and rapid rail and light rail systems must provide comparable complementary paratransit service to individuals with disabilities who meet certain eligibility criteria to the extent that an undue financial burden is not imposed.
Physical barriers in existing places of public accommodation must be removed if readily achievable (i.e., easily accomplished and able to be carried out without much difficulty or expense). If not, alternative methods of providing services must be offered, if those methods are readily achievable.
The holes in the ADA allow companies that present public services, as well as the government itself, ample opportunity to wiggle their way past ADA laws based on, 'hardship.' There are, 'certain obligations,' not clear ones. Preference is always given to the non-disabled members of society, corporations, and government.
America, the only nation I can speak of with any level of certainty, continues to elude efforts to make this nation equal for all people in this nation. People with Disabilities; America's largest minority population, still do not have equivalent rights with our fellow citizens. Only through ratification of the Convention on the Rights of Persons with Disabilities and its protocols, as well as genuine, continuing effort, can America truly become a nation of citizens with equal rights.