An Open Letter to PDD about the Community Conversation on SIS

A while ago I received in the mail a fat and heavy package of papers from the Alberta Government agency known as “PDD”.  Thinking this had something to do with our recent encouragingly positive experience with “ICE”, I opened it quickly only to disappointingly discover that in fact the package was an invitation to share my thoughts on “SIS”.

After a few days’ thought, I RSVPed that I would not be attending and shared a few of my thoughts.

Herewith, I make that email an open letter to PDD.

Ms. ******:

I received in the mail an invitation to attend a “community conversation” (I think that means “meeting”) about my experience with SIS and the PDD program.  I’ll have to decline that invitation as the Ellerslie Rugby club is a quite remarkable distance away and I have an almost 21 year old developmentally delayed daughter to care for.  I did begin my “conversation” with PDD when my daughter turned 18 but we have yet to receive any actual “supports”.  Perhaps such supports might have freed me up for the “community conversation”, but, frankly, I don’t suspect I would then want to be bothered getting to Ellerslie for the meeting rather than just having a bit of a quiet time with a good book.

More recently there seems to have been a little progress on my daughter’s file, coincidentally, perhaps, with my going public with our absolutely depressing experience with PDD.  Please have a look: “One Family’s Experience”

Since (finally) being connected with ICE (love the acronyms, by the way.  They really get the obfuscation to a high level) I’ve been feeling a little better.  They not only return phone calls, they phone  frequently (weekly) with updates.

As for my “experience” with SIS, I’m not sure when I’ve actually encountered it, except that it seems to have been a way to keep PDD workers well away from PDD clients for a number of years.  I’m sure that this time spent training for and instituting SIS rather than, for example, responding to client phone calls in a timely manner, being in the office at any time over a six month period, or handing a client’s file off to a worker who will actually be around — I’m sure all this has encouraged more than one family to shuffle their adult children off to group homes in absolute frustration.  Whatever the good intentions of importing some package of American-made questionnaires, from what I can tell, the effect of the implementation of SIS has been to divert PDD’s “Human Resources” away from clients.  The workers at this point are serving the system, not the *people* they were intended to serve.

I feel very fortunate that our family is in a financial situation which allows us to manage without the “supports” PDD offers (but, as yet, has largely failed to provide). I worry very much for families who have to cope with developmental disabilities without the private resources we enjoy, both financially and in our unusually close neighbourhood community.  It must be simply hell for them, and trying to deal with PDD in that situation must be impossible.

Again, I don’t really know what SIS is, I really don’t understand why SIS is so important that it has apparently diverted resources from the clients of PDD, and I really don’t think I would have anything to contribute to the “community conversation” in the deep south of the city.  And, while I have been comfortable with my dealings with ICE so far, if I win the lottery one day, I’ll just cut through the PDD crap and privately hire whatever “supports” I feel necessary or simply convenient.  If I hit a big enough jackpot, maybe I’ll help a few other families out of the PDD mess.

On a final note: that was a very pretty, glossy, heavy package of (limited) information PDD mailed out about the upcoming “community conversation”.  I wonder how much the whole shindig is costing.  Certainly the mailout could have been produced at much less expense to the people of Alberta.

Best wishes, etc.

___________________

A bit of AE (Acronym Elucidation):

“SIS” = “Supports Intensity Scale” – not much clearer than the acronym.

“PDD” = “Persons with Developmental Disabilities” – the Alberta Government agency mandated to disburse funding to provide for the special needs of adult Albertans with developmental disabilities.

“ICE” = “Independent Counselling Enterprises Inc. – One of many private businesses who are paid by the government to do the work of providing for the special needs of adult Albertans with developmental disabilities.

The Alberta Government’s “People with Developmental Disabilities” Agency: One Family’s Experience

Feeling annoyed this morning. For two years my daughter has been a “client” of the Alberta Government agency, People with Developmental Disabilities (PDD). In that period, I have had, on two occasions,  my phone call returned just at the end of office hours on the Friday before the “worker” goes on two week vacation. Both times a voice message was left which demonstrated clearly that the worker had not actually paid any attention to the message I had left with her.

In the two years I’ve been dealing with PDD, I have consistently suggested that the biggest assistance my daughter could use would be to have someone other than her family to get her out of the house on outings, to help broaden her social horizons. Two years I’ve been saying this! So far, PDD has offered to pay for a private agency to teach her to use public transit (something she has been doing already for years) and they’ve offered to pay a private agency – which would also require a payment from us – to refer her to some sort of work or volunteer placement. The only placement on this agencies list of sample placements which was at all appropriate for her was the Nina Haggerty Art Centre — which does not require a referral. We just walked in one day and signed her up.

My last phone call to the PDD worker was to check up on the two year old request for the respite companion. I called on a Tuesday and left a message (of course). On Friday at 4:29 she called and left a message. She spoke as though it was a new request and said that she would get the paperwork going as soon as possible but it would take some time and she’d be away for two weeks.

In two years Alberta PDD has done absolutely nothing for my daughter and the one request we have made, the request we’ve been told has been perfectly possible, has been ignored. Two Years!

I feel so sorry for individuals with developmental disabilities in Alberta – and for their families – who don’t have the private resources our family is fortunate to have.

By the way, Alberta PDD’s “contact” page on their website is a year old blank page.

Update March 14, 2014: I noticed this morning that the PDD contact page has been updated to something useful sometime since my post appeared — interesting timing.  Also, I telephoned my daughter’s worker again this morning – and left a voice message.  I asked that she mail me all the documents I might need for “family managed services”.  I expect this is a desired “outcome” – why have civil servants manage services for the disabled when that task can be offloaded to families of the disabled?

 

Update 2 for March 14, 2014: the worker and I finally made contact and had a long and not completely pointless conversation.  My takeaway from that conversation, in a nutshell: 

1) Communication has been almost impossible due to a combination of social work-speak jargon, and, more significantly, the fact that the worker has been, she tells me now, basically out of the office since October and my daughter’s file was not transferred to another worker.

2) PDD services seem to be provided to clients through a Byzantine layering of  Government and Not-For-Profit (and possibly for-profit) bureaucracies which do little, I suspect, to aid communication or efficiency.  I have the impression that for every dollar of real service a client gets, there are several (many?) dollars going to various levels of bureaucracy in Government and non-Government agencies.

3) Considering the challenges of being a care-giver for an adult with developmental disabilities, the added stress of dealing with the absurdities of PDD are not worth whatever services might be available.  As I told the worker today, I suspect that many caregivers throw up their hands and shuffle their charges off to group homes.  The worker told me that “that is certainly not our intention.”  Well, the intentions are good, it would seem. Unfortunately, the road we’ve been treading with PDD the last while seems like a bit of a prelude to Hell.