Paul Knoll has just returned from a trip to Turks and Caicos supported by LiveWorkPlay. Coming just a few days short of the anniversary of his mother’s death last year, Paul was unsure about coming on the trip, but his sister Helen Ries encouraged Paul, and you can see from the photos that he had a busy and enjoyable week.
This does not mean however that Paul, his sister, or his brother-in-law do not continue to grieve and also continue to adapt to their lives without their parents (Henry Knoll passed in 2011).
Helen and Paul are now sharing their story to draw attention to challenges with the Developmental Services system as well as to encourage others to take planning for the future as a real and serious necessity.
As Helen explains in the interview on CBC Radio The Current, attempting to replicate how her mother and father supported Paul was not the answer. “I know my brother didn’t want that…who wants their sister in their face all day long?”
This is not because Paul is not grateful for his sister’s love or support. Rather, it is about adult siblings who need to live their own lives.
Over the past year Helen has seen many important improvements in their relationship “I have learned to respect what Paul knows about himself and to let go…let him be his own person…I always knew but I really see more clearly what an amazing guy he is.”
Helen goes on to explain that she is not a “mother” now. “We are in a space-sharing arrangement as equals, it is not a hierarchy.”
Some of the concerns about Developmental Services cited in the article include Ontario Disability Support Program (ODSP) and Developmental Services Ontario (DSO) and how it feels as though their main function is to be gatekeepers, rather than helping individuals and families with their needs. Helen was particularly upset about being offered respite services that take Paul out of the home, when what she really wants is help for Paul within the home and his existing life. As we have heard frequently at LiveWorkPlay, the experience of the DSO process often feels like an extensive effort to emphasize a person’s deficits.
With respect to ODSP, Helen identified the challenge of managing Paul’s inheritance so as not to put his ongoing funding in jeopardy, which she describes as a “poverty trap.” This has to do asset limits and gift limits (in Paul’s case the management of the Henson Trust aka Absolute Discretionary Trust comes under the “gift” directives, an association that Helen would like to see changed).
Following Helen’s interview, Al Etmanksi discusses some recommendations for families in planning for the future: addressing their poverty through proper estate planning, and addressing their social isolation by making very deliberate efforts to expand personal networks and promote reciprocity.
We could not agree more!