Thursday 2 May 2013

Amanda Telford Is A Good Mother

Families of adult children with disabilities in Ontario, Canada, are in the news today.  An Ottawa mother, Amanda Telford, 'abandoned' her son Phillip (aged 19) in the offices of Ontario Social Services and the lines in her tearful, exhausted face tell a story of frustration, isolation and lack of support for her family. Telford's son Philippe has severe autism, developmental disabilities and challenging behaviors.
A few days ago, Philippe escaped from the family home and wandered to a restaurant three miles away before he was found.  The next day, he managed to open a locked medicine cabinet and swallowed a bottle of blood pressure pills, necessitating a seven hour stay in the ER before he was declared healthy and fit to return home.  When he reached home, he escaped again.

Philippe Telford requires twenty-four hour one to one supervision to keep him safe.  He is non-verbal and very physically strong as well as agile.  When Philippe turned 19, his access to school ended and his name went on a long waiting list for day programs and supportive housing.  Philippe must wait for someone currently receiving service to pass away before he will be offered assistance.  And there's a good chance that Philippe is not even at the top of the waiting list - clients whose parents are dead have top spot.  Amanda Telford abandoned her son in order to get him the services he needs to be safe.

Currently in Ontario, an inquiry is being carried out by the provincial Ombudsman into the crises of families who are struggling to support their adult with developmental disabilities.  So far, the Ombudsman has taken statements from 700 families in crisis and that number is growing quickly.  Families are desperate and push has come to shove.

Institutions to support adults with disabilities in this province and elsewhere have closed, and that is a good thing.  But the funds realised from the closure of those facilities have not been reinvested into families who support the next generation of children with disabilities growing up.  Community care policies were developed 'back in the day' when a developmental disability was a life-limiting condition.  As recently as twenty-five years ago, medical textbooks listed the longevity of someone living with Down's Syndrome as 21 years.  Today, those without complicating medical conditions live normal life spans.  Today's young adults are the first generation of people with disabilities who live outlive their parents - ever.  And no government anywhere is ready for this social phenomenon.

Two things we know for sure:  1) we have growing numbers of people aging into disability AND increasing numbers of people with disability aging and 2) community care budgets are being impossibly stretched due to these demographic changes, pitting an aging population against people with disabilities.  

Today, a CBC radio show "Ontario Today" took calls from families in crisis trying to find day programs and housing solutions for their adult children with developmental disabilities, including autism.  I hope that both provincial and federal authorities involved in social care policy heard the program.  Every parent caller knew what kind of help they needed.  They had developed solutions that were  creative, responsive, collaborative and fair.  Many parents expressed a wish to co-pay with government such solutions and to remain significantly involved in their child's life.  Every parent who called in was exhausted, desperately worried, and very angry.  But, they also expressed the deep and abiding love for their vulnerable children, the same as any parent would express for their able-bodied child.

Our society used to have institutions for vulnerable citizens.  Then the institutions closed and families were expected to 'look after their own'.  But families cannot look after a vulnerable child forever.  Parents get old and infirm, or they die.  Direct care and housing solutions need to be co-created by families together with policy-makers.  The will is there, the time is right.  Let's do it now.


lacyndarella said...

I never thought she was anything but a good mother. I read about it. I read she was a social worker. I read that he took 14 pills the day before that he took from a locked cabinet. I saw the pictures of a sad, frazzled, worried mother. I would never think she came to this decision easily... not by looking at her face.

The Caregivers' Living Room said...

I know Amanda and she IS a great Mom. We did some work together a long time ago on preschool integration - she has always been a fantastic advocate for her son. I haven't seen her in many years, but she has a distinctive voice that I recognised right away when I saw the news. Every single family in our area that has an adult child with developmental disabilities who HAS service of any kind had to abandon their child to get it. It's disgraceful and horrific for parents who love their child.

Sylvia said...

It sounds like she was an exhausted overworked mother who had come to end of her rope and didn't know what else to do. The situation is scary. The same kind of thing has happens in the US too.

Brenda Parris said...

I followed this story and I was one of the parents who spoke on the radio show. I know what Amanda is going through as I had to do the same thing to get services for my child. I had to give up my child to social services/CAS in order to get the extensive supports he needed to survive. Two days before his 16th birthday, important date as he would receive no service as an adult, I gave up my child to CAS, he was made a Crown Ward and we received residential care and support for him for many years. I did this knowingly as I knew they had deeper pockets than I did. He received great care and has become a wonderful young adult who thrives much better due to the intensive care we received then. Due to the fact that I got care then, it is carried over into his adult years. so , ironically, because I asked for help early enough, I now get help that I know no other parent would receive it they managed for years without support. This is so unfair but is what happens when we don't put the needs of complex care kids first.
so to Amanda, I salute you and I know you are a great mom and don't feel bad or diminished or any such thing because I know you did what was best for you and your whole family. I would dearly love to tell her this directly so if anyone can arrange this contact, I would gladly like to support her publicly and privately. I know how it must feel, in ways that few other parents can feel.

The Caregivers' Living Room said...

Hi Brenda, I heard you speak on the radio (Ontario Today)- you spoke so well! We are all in the same boat - our family story is a little different. We went through the provincial appeals process to get a deal for 24 hour home nursing. Local committees of last resort through to the provincial "IMPAC" level (interministerial 'hard to serve') appeals committee which went three rounds before the Premier's office intervened to make our region give us what we needed. CAS was my advocate as well as the Office of the Child Advocate. Our family as falling apart. We shouldn't have to endure such misery to get essential services. Thank you for sharing!