Online consultation: Convention on the Rights of Persons with Disabilities:

[Guest guest]

June 26, 2009

Acting Director General

Office for Disability Issues

Human Resources and Skills Development Canada

Attention: Oleson,

consultation@...

Online consultation: Convention on the Rights of Persons with Disabilities:

http://www.hrsdc.gc.ca/consultations

Emphasis on the importance of listening to children and youth in care has been

hi-lighted for its value; views bear significant weight on matters pertaining to

decisions made in respect to individual's lives. Alas, lapse is identified

amongst a neglected group who are not given similar consideration to principles

and values - which, in turn, infringes upon very basic human rights - those

individuals with developmental disability.

The recent 755 page Annual Report issued by Mould to Minister Tarchuck -

Child Youth and Family Enhancement Act, Matters to Be Considered - consist of

issues which bear further expansion regards to inclusion and reference to

individuals with disabilities. Source:

http://www.advocate.gov.ab.ca/547.html

While I speak on behalf of scores of families in saying that I am pleased that

due to our child's individual case, Policy has been Amended to define separation

of children with disability from those need of protection, if we do not truly

follow-through with strategies needed to implement change, Amendment remains,

but an empty promise and does not offer viable solution.

Specifically, I am referring to Manual amendment in the Family Support for

Children with Disabilities (FSCD) Act of 2003, section 2.3. Effective December

2006:

http://www.child.alberta.ca/home/527.cfm

" The Family Support for Children with Disabilities (FSCD) Program to have

separate legislation from that of child protection services. "

Amongst solid caseworkers that I have personally the pleasure of interacting

with; those who seemingly have a vested interest in children - emphasizing value

of the child's needs in decision-making - they, too, are often at a loss when

considering the input of persons whose communication skills are limited by

disability. In example, " It is not as if I can just ask her what she wants " .

This was an exchange by a senior caseworker regards to the child who was mainly

non-verbal. That is an attitude which is both archaic and inaccurate!

Individuals with limited vocabulary are still able to provide honest reflection

towards their needs and desires. That is where we must depart from traditional

thinking and truly implement strategies which support separation of those with

disability from children in need of protection in order to satisfy effective

solutions of personal needs. One suggestion is to incorporate the input of

front-line services providers such as rehabilitation agencies and hospitals

which deal on a daily basis with clients who have unique medical and

developmental issues. Inclusion of human rights groups, teachers and parents who

are able to present a more accurate concept of a Family-Centred Care approach.

If we visit perspective of those who can justly interpret the needs of persons

with medical and developmental differences through experience and offer methods

which allow freedom of speech to exist, many positive aspects can emerge. One

would be amazed at how well persons with very limited vocal skills are able to

express positive and negative response to choices! Simply because an individual

may be developmentally delayed does not negate ability to assist in the

decision-making process. Receptive skills are often much more acute in

individuals than expressive limitations present outwardly... It is our duty to

find methods which honour human rights in members of our society who struggle

with skills that those without developmental difficulties take for granted...

such as the case with expressive speech. The child, for instance, who utilizes

sign language to indicate that she is being " hurt " . Yet, how many social

workers are apt at interpreting ASL? Training and hiring of individuals with

skills of translation are necessary to represent groups of children who do not

use more conventional communication methods.

Inclusion of all individuals in society as valued members remains a novel

approach to some who have not been privileged to know and love a person who may

be viewed " differently " from the norm. Therefore, resulting reaction by

Officials is often an inappropriate reflection of basic consideration of human

rights. Recent experience found a Government Representative within Justice

Alberta describe a child with a chromosome disorder as a person who " suffers " .

That view - as anyone who has contact with a person with disability or

developmental difference - would confirm is not necessarily true. An individual

though delayed, more often than not are typically described by people who

interact with them, as a person with a " happy-go-lucky " disposition. It is

ludicrous to surmise that one " suffers " simply because of a developmental delay!

Furthermore, that same Representative went on to refer to the individual as

" it " , dehumanizing the person completely! I am abhorred - in particular that a

Representative of the Government of Alberta would state such an ignorant remark

- and this is the sort of archaic thinking that, we, Society, must combat

against and bring awareness towards so that celebration of diversity is embraced

and rights of all individuals may be secured. It was not too long ago that

Activists such as Parks needed to stand up and protest against

inappropriate actions that stemmed from historical prejudices. I feel that much

inappropriate reaction arises from lack of exposure and subsequently translates

to inhibit what is constitutionally, fundamentally and morally correct. I find

it ironic that even amongst younger generations than I, people need be

introduced to concepts that seem self-evidentiary. However, I was blessed to

have learned insight directly from the people that have been in my life: We are

each valuable and productive - and matter - despite outward appearance. That

premise aside, it is the responsibility of those who service children in their

role as protectors to become increasingly aware of new trends and outlooks and

to embrace change so that all individuals are able to benefit from increased

vision. Change in attitude not only benefits those we endeavor to include, but

we, in turn, learn much from those who think and see the world through diverse

perspective.

Society is presently ill-equip to deal with diversity. I have found in having

been a parent to a child with disability and in speaking with other families

that similar challenges exist in how we are regarded by others and situations

responded to. Mostly, I feel it is lack of understanding that comes from

exposure to situations and differences. Personally, I had no previous experience

with understanding the issues surrounding daily life as a person who would come

to advocate for basic human rights on behalf of others. It was only through

direct experience that I was afforded such insight. I was equally devastated to

be informed of my child's prognosis having had no prior exposure while growing

up to others with differences in our community. The initial reaction is much a

grieving process and for some, such as myself, it took a long time to find peace

and acceptance, but as I came to know my child, it was most obvious that despite

delays, she was a beautiful, mischievous, funny, sweet and loving soul. She was

no less important than any other being. As a matter of fact, oh, how much she

has taught us all! I am very proud to have been 's mommy!

Being 's mom has been so much of a journey of growth: When our daughter

was born in 1993, we were given the most dire prognosis. I remember as if it

were yesterday being in the office of the genetics' clinic and receiving the

diagnosis of rare genetic syndrome. As is often the case with less known

disorders, there was no information available and the lone piece of literature

the specialist could offer was a photo-copied page from a text-book: As the

information was handed to us, the doctor apologized for what was written in the

literature was a list of physical markers and a prognosis of development...

" Imbecile " . The word leapt from the pages at us to cheat us of all resolve. We

had prepared for almost every scenario that our daughter might face - inability

to walk, see, talk, have children of her own - but, to fathom that our daughter

would not realize who we were, that destroyed us (and, by the way, turned out to

be completely inaccurate!) To compound matters, in effort to help, the clinic

sought out the counselling services of - previously known - HCS (Handicapped

Children's Services). However, instead of offering direction to secure help for

our child, the caseworker, indicated that as a young family we could not

possibly meet the demands of our little girl's anticipated needs. That the sole

way to secure assistance would be through an out of home placement where funding

and services could be provided within foster placement. The archaic view at the

time was to place children with disability outside of their homes and community

and fund alternate care-givers rather than natural family. While our experience

occurred in 1993, to this date, families still come forward seeking to avoid

such oppression. Solid, loving families of children with a variety of

differences, Autism, for instance, who are informed that they must relinquish

guardianship of their child on a temporary/permanent basis to achieve help. It

is unconceivable, and yet, reality for many!

You see, that is how I can to take such a strong stance on the importance of

solidifying Family-Centred Care practise. These, are all gifts that my children

have taught me. I've never been a loud voice, but I am certainly a determined

one. When injustice surrounds others, as it did our family, I feel it is my

obligation to return the gift that taught and challenge inequities.

There are too many individuals who lack the skills to adequately advocate for

themselves and it is our duty as Society to teach these to others so that they,

too, can become strong.

While it is commendable that Ministries are at last taking a look at strategies

to avert over-lap of children with developmental needs from being grouped

amongst - and confused with - those individuals who may require protective

services, without creating a new Office and distinct Policy which over-sees

those persons accessing Government supports, true separation cannot exist. Many

workers still operate on a child intervention model when approaching families of

children with disability which negates the true reason that Government support

is required... Disability alone! Take for example, the outlook of the Manager

representing Children's Services who remarked towards the child with disability;

that she could not possibly ask her opinion... " Why? " I inquired. We need to

employ social workers who have familiarity with persons with disability and true

understanding that despite outward appearance of deficit, individuals each have

the same needs whether neurotypical or developmentally challenged to express

opinions - and, the right to be heard! Caseworkers, many of which are already

disillusioned by the abusive situations that they have witnessed, must naturally

become seasoned to shut down emotions in order to survive the tragic

circumstances encountered on a repetitive basis to perform duties. These same

individuals must not be trusted to represent the needs of children with

disabilities and their families because no comparison within the two groups

exists.

Children with disability are a distinct group that require legislation and

personnel to monitor Governing of Services... That is not to dismiss or deny

that situations may develop where over-lap of children with disability are

maltreated; any such instances should be dealt with accordingly, but we are

strictly discussing those families who access services and funding for

disability. We must regard the fundamentals of human rights by supporting solid

natural families who - without any issue of abuse or neglect - require

assistance for their loved one. We must nurture and respect the loving relations

that exist amongst natural families supporting individuals with extraordinary

needs with means that are least disruptive to the family unit. Involve input of

rehabilitation agencies and hospitals alongside Family Services for Children

with Disabilities (FSCD) to empower natural families through education and

strengthen ability to self-advocate when seeking assistance. Help cannot come

at the expense of the family unit; nor through inhuman requests to surrender

guardianship to achieve it. Natural families of children with extraordinary

needs are already facing emotional and financial challenges without being

subjected to fear of collapse of the family unit. That individuals step forward

courageously to inquire how best to support their child and stabilize family,

must not result in being penalized and stigmatized by the umbrella of Child

Protection Agency Practice.

Joint ventures must include correspondence amongst Governing entities, such as

Supports within Aids to Daily Living and the Ministry of Transportation to

ensure that each Department is aware of current affairs and working

constructively to avert overlapping problems. For instance, penalization of

recipients of devices which disappear and remain unaccounted for if an

individual resides in a foster placement... The person who requires access to

equipment - in many instances - is unlikely able to return needed items on their

own, but depend upon the sources that signed for the equipment in the first

place to fulfill obligation to do so on their behalf. By the same token, the

person who takes on the responsibility for signing out of aids on behalf of a

person in need, must be accountable for its subsequent return; thus, the client

does not go without needed equipment if it is retained by others without their

consent or knowledge. Clearly serious deficits exist when one Ministry is in the

process of internal review of an individual while another is allocating funds to

the same entity under scrutiny.

Where a number of references have been made to increasing funding for out of

home placements and foster care, including recruitment and retention strategies,

I find no similar allocation offering assistance towards natural families to

maintain the family unit. No slight is intended towards those individuals who

offer genuine care and affection for children through foster care, which is an

unfortunate consequence when commentary is aimed towards those representative of

placements who do exist which are over-burdened and/or utilizing their

significant role incorrectly as a method of income without vested interest in

the child(ren). Differential treatment of children can and has arisen within

fostering support of children who enter into a family constellation and this is

an inappropriate, offensive, unacceptable guise of " care " . Continuous review of

a child's needs in out of home placements must be revisited and if and when

change is deemed necessary, an action plan formulated and follow-through must

occur. The foster care system is strained and over-laden by vast numbers of

individuals who are incorporated into the system without adequate reflection on

evaluating their status and competency; particularly, children with medical and

developmental disability.

Barring obvious constraints in mind, maltreatment and neglect of a child in care

cannot be ignored and a setting that abuses its authority by intimidation

of caseworkers and natural families are not fit to maintain status. Statistical

evidence indicates that less monies are required to maintain a child with

developmental needs under Guardianship of the natural family than it is to

employ a foster placement to provide care... At times, out of home placements

are, indeed, required and warranted - whether on a temporary or long-term basis

- but maintaining inclusion of natural family is certainly in the best interests

of the child. All children are individuals and although a model must exist on

which to base premises, so too, must we distinguish individuality and support

the needs of the child on a case by case basis. Less intrusive means other than

relinquishing guardianship to the Director has beneficial outcome for all

involved in dealing with children with complex health issues. Therefore, in

discussing permanency, it is important to emphasize the fact that it is much

more sensible to support the natural family unit by primarily increasing

services and funding to this core group.

One of the duties of the Office of the Child and Youth Advocate (OCYA) is to

involve the Public and families in advising the Ministry of Children's Services

of defects in the system and make recommendations to correct deficits. It is, as

well, the duty of the Advocate to respond to complaints and submit these to the

Minister and this, in itself, is a contradictory practice. Similarly, while

recommendations to the Minister outline warrant of citing constitution of

maltreatment of children in care to allow definition to be enforced, this does

not suffice. In the meantime, while strategies are developed, children continue

to be maltreated and abused. The role of the OCYA is to represent children's

best interests, yet is not provided with ability to strategically intervene and

offer critical suggestions that can be incorporated into Governing of individual

circumstances at critical times. Timeliness is a vital feature in promoting

protection of children. No valid reason exists in prolonging action where

confusion over interpretation of abuse exists. There are standards that have

been set that clearly outline factors constituting maltreatment and no one

should be free from accountability where there is documented evidence of its

existence. While a deficit of quality foster care providers exists, this does

not negate responsibility to act upon reports of maltreatment of youth and

follow-through to prevent further damage. As per consensus of the OCYA, too many

youth are languishing in inappropriate living arrangements.

Further, there is no acceptable standard for clarifying the importance of

distinguishing care-giver's roles: Medical and educational documents must be

maintained; to be absent or missing from a child's files is unacceptable. It is

the responsibility of the guardian to maintain these and should the Director be

granted provision of Guardianship, certainly that same entity is under legal

obligation to secure and maintain these on behalf of the youth. As pointed out,

reporting between Educational (as well as Medical Agencies) and Child Welfare

Authorities are missing key opportunities to coordinate efforts to involve one

another. Absence of awareness exists between Schools and Medical Institutions

towards Legal Authority on very basic and vital issues. This ranges from simple

matters such as the authority to grant permission for everyday field trips to

more major decisions such as allowance or denial of administration of drugs - or

- even a medical procedure! Negative associations exist in the Public's

perception of those individuals who seek help for their loved one when services

are allocated under the same frame as Child Protection. Negative attitude is not

limited to the general population, but transmits to those of caseworkers;

supports need for creation of an entirely separate provision of status for

individuals accessing services for disability alone under new terminology apart

from the Ministry of Children's Services. Active participation across the

humanities will not detract from accountability, the more input, the better a

chance we have of promoting awareness and ability to maintain the child's needs

first.

While freedom to protect information is a component that must be considered and

honoured wherever possible, it cannot replace the essence of core protection

issues; particularly when addressing the health of vulnerable persons. Thus,

electronic medical records do need be in place to ensure that similar services

and treatments - for injury, for example - are not being rendered to the same

individual at differing facilities. Electronic reporting would ensure that such

scenarios are better flagged by personnel who can take action to report to

Officials where follow-up must be embarked immediately to avert harmful

conditions. Breakdown in communication exists between the Director and OCYA:

Inability of the Office to fully express an honest depiction of inadequacies

that have and do arise in the system. As well, inability to institute formal

decision-making authority. It is a limiting factor when OCYA is assigned to

review complaints, but is unable to respond constructively. Whether there is

fear of retribution for allowing indiscretions to surface - which have arisen

under Ministry Direction - surely compromise can be found in which

accountability can co-exist alongside the premise honouring best interests of

the child. Mistakes are human, but continued transgressions in the face of

enlightenment continue to plague the Child Welfare system and this is

intolerable. It is this inaction which is preventable with full disclosure.

Deplorable acts of Leadership cannot be dismissed. Ownership for transgressions

must arise and consequences visited.

Recommendations that are made to the Ministry benignly must be openly

regarded... It is with the tragic outcome of individual experience that lessons

are learned and preventive measures offered in effort to avert future discord.

The Ministry need recognize the input of families' strength of conviction to

come forward to assist with sincere appreciation of these efforts. In order to

Minister with transparency, the OCYA must be able to report beyond the Ministry

and to do so without limiting honest portrayal of Government inadequacies.

Effectiveness is lost if a reporting entity is unable to do so unless

encouragement of diverse representation of issues is enforced, including

criticism of current practice. The United Nations Convention on the Rights of

the Child further supports the need to focus on the best interests of the child,

thus, for similar reasons, litigators who represent the child should be separate

from those employed by the Government of Alberta to perform duties; there must

be fair and impartial response to issues aside from conflicting interests that

arise.

The OCYA, itself, proclaims need for Public involvement in expressing its view

towards the very issues that plague us here in Alberta - not restricted to

Provincial territory - but, continue across each Province, State, and Country.

Take heed and respond to plea for promotion of Advocacy on behalf of vulnerable

individuals who deserve accurate representation of needs and enforcement of

distinctive Policy. Meaningful solutions arise with active interest stemming

from establishing a distinctive effort to combat deficits by viewing matters

constructively with honest exploration. This must include delegation of

Authority for decisions allocated to Advocates who can openly respond to

concerns amongst the persons they represent. Specifically, the OCYA, who also

represent children in care with medical and developmental disability.

Communication is key and ability to offer perspective impartiality is

imperative.

Sincerely yours,

Velvet ,

Administer for Tetrasomy 18p Canada

(\ -- /)

( \()/ )

( / \ ) TAKE THIS LITTLE ANGEL ^j^

(/\/\) AND KEEP HER CLOSE TO YOU

/ \ SHE IS SENT AS A GUARDIAN

(____) TO PROTECT ALL THINGS TRUE

" 's Syndrome "

http://www.tetrasomy18p.ca/