Tell us your story

HELP ME!

January 08, 2010  at   3:07:12PM

My name is Robert Le and I am a 22 year-old PDD client suffering because of Ed Stelmach’s cutbacks. My life has been put on hold because the government has frozen my approved PDD funding in hopes that I will die before they have to deal with me. I have Duchenne Muscular Dystrophy. This is a progressive, terminal illness that is destroying every muscle in my body. I am a quadriplegic confined to a power wheelchair with only limited use of my fingers. My condition is now affecting my ability to breathe and will also affect my heart, my ability to swallow and my bowel and bladder control. They say I have a life expectancy of 25. With proper medical interventions and a quality of life I could live until I am 40. I do not want to die but am losing hope. When I was 14 the Alberta Government removed me from my mother’s care and placed me into foster care. I have been with my new family for almost nine years now. I require around the clock care so my caregiver spends her entire day assisting me with every aspect of my life and then has to get up in the night to help me with repositioning and pain. When I get sick my caregiver gets no sleep. PDD will not approve respite or an aide to assist my caregiver. They are forcing her family members to miss work and school to step in and assist when she gets sick or injured. We have no wheelchair transportation so we are isolated in the home. My wheelchair weighs over 350lbs and barriers in the community make it very difficult to get around. I am on a fixed income and receive $1188.00/mth from AISH. I need medical equipment that no one will fund. I need an electric bed that no one will fund until a doctor says I am near death. It costs me on average $60-$100/round trip for a taxi so I can get out into the world. Specialized public transportation is great if you don’t mind spending 4 hours on a DATs to attend a 20 minute appointment. My caregiver has told me that she cannot keep caring for me without assistance. She recently ended up in the hospital because of problems caused by chronic stress and sleep deprivation. She begged the government for help but they ignored her. She tells me it is not my fault but I feel responsible. The government pays my caregiver who is a nurse less than $5/hr to care for me and is talking about cutting her wages further. She has had enough but doesn’t want to abandon me. There is no where for me to go. We are both scared. I have tried three PDD approved homes for respite in the past year. In these places I was hit, called names, denied proper nutrition, forced to bathe at a public pool and left alone without assistance in the night. I had to watch other clients in the group home go hungry and be directed to the food bank by their staff because the oven was broken and the cupboards were bare. None of these homes were properly monitored to ensure that the clients in them were being properly cared for. What is happening to the clients who can’t speak out? I was involved in the “Families Who Care” rally at the legislature last year. At that time I met with Minister Jablonski and the Director of PDD to share my story. Obviously Premier Stelmach and the Minister do not care because over a year later my situation has gotten worse. You can see me in the “How I Live” video on the Albertans Who Care website (my face is the icon). Last year PDD wanted me off their books and felt I should be in long term care. If that is my only option then you might as well take me out into an alley and shoot me – it would be more humane. I am begging the people of Alberta to rally together and stop the cuts. People with disabilities want the quality of life PDD promised but have failed to deliver. Robert Le Sherwood Park, AB

please help me, my family, and friends!

December 21, 2009  at   1:23:36AM

3 out of 5 adults have disabilities in my family. i have attention deficit disorder, nonverbal learning disability, and cerebral palsy. my dad is legally blind and hard of hearing. my grandma has severe dementia. all of us need the government's help to survive. i currently don't qualify for direct PDD services even though i got a developmental delay because i am not "mentally retarded" enough according to the PDD staff. yet i do recieve some services from PDD to help me deal with my high frustration level, and lack of social skills. i receive counseling and other supports from an agency that is funded by PDD. my grandma lives in a nursing home funded by the government. she only earns $17000/ year, $13000 goes towards her nursing home fees. my dad is working full time trying to take care of me, my grandma, and the rest of my family. if my grandma, my dad, and me don't get the help we need from the government the following may start to happen. -my grandma may get kicked out of her nursing home because they can't take care of people who have low incomes. - i may end up dead because i get so frustrated that i smack my head when i lose control. counseling helps me release my frustration in a safe way. also through the other programs i am in that are funded by PDD- i have made friends who are my allies, and inspiration. if the program that we go to disappears i may not be able to make friends. i don't make friends easily so when i actually do end up having friends i cherish them. i like being able to see them every week in program. my dad needs tools to read, and write, to see and to hear. he is not a rich man. if services are cut he may not be able to get those tools. he may end up losing his independence. that worries me and him along with the rest of my family a lot. please don't cut $ from our services. we need them to help us live a better quality of life in alberta.

Community

December 18, 2009  at   11:25:22PM

I have been taking care of my daughter with a cognitive disablity for 20 years, but not only am I a parent to a young person with a disability but I also work in the field of supporting adults with disabilities both in daytime programming as well as community supports (residential). I have also been a fosterparent for many years and have nurtured many young people with mental health disorders and disabilites. I think that just like the "normal" citizens of this country people of all ages with disabilites deserve to be protected and if this means giving them a support person to help make their quality of life better then who should be able to take that away from them?

Baffled!!!

December 17, 2009  at   5:48:21PM

I thank you, Velvet Martin for your informative reply! I must admit to being baffled by the sheer ignorance and indifference of a governance that needs to be legislated to make an official seperation between: "The Family Support for Children with Disabilities Program to have separate legislation from that of child protection services." This is why I urge all stakeholders to assemble into a genuine partnership to develop a practical model of what can then become "legislated". We need to formulate and to address the appropriate questions and answers to our own problem, with the support of the governing authorities. First question: "Why does it not happen already in a democracy?" Second: How do families come together and collaborate to satisfy their mutual needs?

Meet My Daughter

December 15, 2009  at   12:14:17AM

Hello? I would love to introduce you to my wonderful daughter Ash, she is a preteen on the outside but mentally she is five years old. My daughter didn’t ask to be born this way nor did she ask to be diagnosed with rare genetic syndrome, heart defect, vision, hearing deficit ADHD, Borderline MR, partial complex seizures, weak immune system and sleeping disorder just to name a few. As years go by it’s harder to get any supports or services. It’s to the point that I have lost my career after 10 years in human services simply because I can’t find any caregiver to care for my child! Frustrating and heart breaking but what can you do? What I wouldn’t do for some respite, I’m burnt out, over tired and stressed, but yet I still find the strength to carry on- fighting for the rights of my child each and every way I go. Some days crying and wondering what steps and leaps would I need to take to find the suitable caregiver for my child? I can’t even get a nanny- Home care has turned down my daughter simply because she isn’t that medically fragile ( g-tube etc) and I was told BY FSCD worker that I should have a teen to provide to my daughter. Come on…… a teenager what are they going to do if my daughter's heart stops beating? What happens if she stops breathing. Sure they can call 911 but can they sustain her life till EMS shows? We had so many close calls with unqualified and trained caregivers and I’m not going to put my child at risk. I'd rather burn out than put my daughter's life with unqualified personnel. Yes its been hard Yes it’s been stressful. But yet I do this day in and day out providing quality care to my child without pay and without support like so many other families out there. Funding is a joke, respite what is that? I haven’t had time for “ME” over 8 years now. I know how human services workers feel about pay and what they do. Because I've been there. But also I know how the family feels. It’s double edge………who knows. Alberta Government better step up and help all these individuals who need it.

Lack of Care Too Costly

December 14, 2009  at   6:05:19PM

Recently, a father of an autistic boy killed himself and his son. My heart bled... I knew *exactly* what can drive people to that end. I'm well-acquainted with a system that provides financial assistance for care that's especially hard to find for children who *appear* to be average, functioning individuals. High functioning autistic and the like... People look at them and think caring for them will be an easy paycheque, but balk when they discover there were *real* reasons that the parent qualified for respite care in the first place... "Come and get your son; he's SICK!" was what the husband of one care provider said after they left an unsupervised little boy (contracted to be in the care of his wife) with their little girl, whom he gave an innocent kiss. I'm well-acquainted with the despair that makes a parent feel so helpless and terrified of the future facing his/her child that they contemplate parking their car--self and child inside--on a railway track at night and falling asleep... hopefully for the last time. Having funding that doesn't go far enough to entice qualified people to help provide support is akin to telling distraught, overwhelmed families that they simply don't matter... that their children's disabilities are their own fault, of their own making and a responsibility with which they, alone, must deal. I'd never wish upon anyone the challenges that face those of whom I write, but it seems that the only way to teach compassion to the ignorant is to ensure they come to love someone who is challenged... so they eventually discover how very draining and difficult it is to care for loved ones with challenges, year after year. "The Village" takes such pride when they help raise the children born with the gifts most often perceived as valuable... the easy kids... But where can they be found when it's time to raise a child with severe challenges? Holding back... waiting to point a finger and say, "I knew THAT one wasn't going to turn out well!" They're the same people who condemn people like the father of the autistic boy who killed himself and his son... but they're not willing to do more than pass judgement, lay blame and suggest that a few bucks could be saved if those damned handicapped people would just pick themselves up and care for themselves.

Family Support for Children with Disabilities

December 11, 2009  at   1:01:21PM

A change I was able to see implemented in the Province of Alberta - and I hope to see incorporated across the Country/Nation - stems from personal experience and is the legacy which our child leaves for others. Amendment reads word for word that of which I sought to obtain on behalf of vulnerable children like my daughter. Amendment to the Alberta FSCD (Family Support for Children with Disabilities) Act, became effective December 2006: http://www.child.alberta.ca/home/527.cfm Section 2-3, Manual Amendments: Policy and Procedures in Family Centred Supports and Services: "The Family Support for Children with Disabilities Program to have separate legislation from that of child protection services."

Small part of the story

December 10, 2009  at   10:36:21AM

Salut! I'm the father of 4, who are now adults. Our daughter, third child and 24, is part of Persons with Developmental Disabilities (PDD) Like each of us, her developmental abilities and/or disabilities are "context induced and maintained". Governments and agencies must learn to adapt their services to the family of the individuals in need, and to implement the removal of all decisional separations between the client, the family and the Government-agency's closets. At present, such partnership is systematically avoided, maintaining the jobs and security of the care givers and of the "system", but not addressing primary context of the family unit. Our experience has shown us that as long as the government and the agencies go on dancing together at the expense of the needs, then the word "service" will remain in fact, the exploitation of the disabilities and needs instead of the long term care needed to make the most out of the need's context from the start of their life. This observation is true for our entire social safety net, all the way to the correctional system. The BC Supreme Court understood that, when they awarded to a dad who stays at home to care for his daughter, the release of his financial support by the Province and the payment of his 9 previous years of staying at home for his daughter's care. Let Alberta do the same, but first, let the Governments, agencies and families sit together to design the partnership and its terms of engagement for the short, medium and long term strategy, in renewing OUR safety net. Much of the safety net is needed for the sake of building the road from self-destruction to self-control and community self-government. Such renewal of our safety net can grow from cultivating the incentive to move people from patient to client to partner. Such is the task and the challenge for the champions and the authorities of free enterprise!