A) David, we would love to tell an amazing story, about one of the five individuals that we transition recently…..although all of the individuals have had some level of story to tell, this one individual and the positive changes in her life, is like a one in the life time in your career. I will ask my Director of Resident Services to forward the story to you by June the 17th for sure…..
The only other thing, that I would like to see discussed is the lack of coordination and sharing of knowledge of specially services that are provincial in nature …and how referrals are not happening (I have a good example in one MCSS region…where they knew or claimed to know nothing about our services.(even after some of their staff tour our program)…in fact when I took that to a higher level within MCSS ……even the director responsible for facility initiative had no idea)…yet intervenor services is undergoing transformation within the same ministry and I do sit on the stakeholder group…..it appears to be silo based…..and very regionally ..
In fact because of this lack of coordination, we are now getting calls from agencies needing support with individuals who are DeafBlind from facility closures of over 10 years ago…..unfortunately the $$ are not there for specially services……..if you would like more…let me know…
B) thanks for your continued involvement in the facility initiative on behalf of OASIS, we have recently welcomed back a gentleman who lived at ORC from age 4 to 17, then transferred to RRC due to overcrowding, no family involvement after he was placed, family secret that mom kept until her death bed, at which time disclosed to her daughter (only sibling) that she has a brother who has been living in a facility most of his life, brother and sister have been reunited, along with nephew, niece, and great nieces & nephews!! such a great story we just celebrated his 75th bday with him and his family! great to see the family involvement and commitment after years of not even knowing he existed, I wish we had been able to welcome him to our community earlier but do have the pleasure of knowing we are supporting him in the highest quality of life for his retirement years!!
some concerns we have experienced are SDM piece and planning for decision making, OPGT doesn’t want to take anything on with out a full assessment completed, which is costly in most cases and most of these folks are not able to give consent for finances or treatment so a clear process for all to ensure consent is in place for all areas for the individuals
the second piece is the information gathered by the regional placement co-ordinators, this was helpful as a start however being allowed to actually work hands on with the individuals on the floor with the current staff was such a bonus for our staff to learn,
the last piece I will mention is confidentiality, we asked for RRC staff pics to do a collage for the individuals room, he had been there for 50 plus years with these folks, pics and possible continued involvement, connection would be nice, I realize there are professional boundary issues but for some of these individuals their only family was the facility staff
thats all I have as we only welcomed the one gentleman and really things went fairly well overall, we actually moved him within a month, that was meeting the family, visiting the facility and then staff training at the facility for 4 days, so record time and he is living in one of our new apartments in style!!!! thanks
C) Our experience with the initiative was quite positive overall. There was some backtracking that occurred because of the class action resolution followed by an attempt to complete some quick capital projects in the first year, but nothing we weren’t able to meet.
We did find that there was and still is some confusion around the “rights” of family members and their perception of this. Some are fine and very pleased with the outcome, some of the resistant families fail to see that our agency has assumed responsibility for the day to day care and planning with individuals and they want to be involved in doctor appointments, dentist visits etc. even though they haven’t had contact with their family member for many years and in some cases never have. We have sent a clear message that the person centered planning includes a role for input and receipt of general information and we are working through this with them. We feel the ministry sometimes offer the families too much say in these matters in an effort to adhere to the class action resolution that “they will have involvement and a decision making role/ consent role in the transition”. Some of the SDM’s are barely capable of managing their own lives, let alone making decisions for the individuals. In one case a sister who has posed difficulties throughout the move process is attempting to utilize our staff as her social workers, this is difficult to manage.
We found the capital process was sometimes challenging to manage as there were times when we had to complete purchases of property and renovate in such a short turn around time that we could only get one estimate on the work, contractors were already booked up and we had to take the only one available. Two of our homes were purchased and occupied within a one month period.
During the last move we received approval to initiate a project at the end of December, had to purchase a home before March, the transaction closed on Mar 7, it required renovation which happened in a compressed time period and we met and moved 5 individuals in less than three weeks.
We found that this situation posed problems when we were negotiating annualized budgets for the individuals, pretty much blindly. The information we received from RRC staff was almost unusable and most incorrect and we had to guess at the supports that would be needed for the folks.
The RRC staff had far too much input and power in the transition planning. In several of the ***(DF) moves we participated in, personal items were lost, items that were promised to be moved were not, poor information was a consistent theme and the individuals were often subjected to last minute “torture” to meet a proposed move date. In my opinion a lot of surgery and unnecessary tests were done at the last minute, my take on this in some cases to prove that individuals shouldn’t be moving from RRC.
I feel that Susan Torrie and her planning team did an excellent job in the face of everything they were dealing with. They provided information when we asked in a timely way and supported us in accessing the individuals at RRC for visits etc. We found them compassionate and easy to work with and formed a good relationship with every member of the team.
D) Just a question with regard to a “vacancy” resulting from the death of someone who left the facility 4 years ago. The Ministry view it as a “facility vacancy” and has not allowed it to be filled using the normal community processes. We have now been advised that the vacancy has been declared provincially because “not everybody is placed from the facility in the east”
We have also been advised that the Regional Planners in the SW are to be used as part of the TAY project. This is to ensure that 140 TAY receive a place by March 2009. The expectation is that planning for this will be “cost neutral”. When I asked if the current vacancy would be transferred to this project – our Program Supervisor was unsure! I am not sure but this may be a SW Region initiative only. Hope this is helpful – thanks for your work on this
E) We welcomed one lady back to *** from Southwestern Regional Centre where she had spent 40 years (age 6 to 46). Her family is thrilled to have her back home. She lives within 2 blocks of her mom and dad who visit regularly. Her brothers are very involved in her life as well. She weighed 46 pounds when she arrived in *** in January 08. She has gained over 20 pounds since her return and is thriving in her new home.
F) *** have returned two gentlemen from huronia and southwestern. They are doing extremely well and we found that the information we received from the facilities and the placement coordinator were for the most part accurate. They gave us all the help and support we needed. One area staff has commented on is the way in which two men who lived for over 50 +years in the institution adapted so well. Once house routines were established they let everyone know what they wanted and didn’t want. When they were in the facility they apparently went to be around 6:30 now they are up and involved way past that hour. It is great to see. Thanks for gathering this information.
G) We have only had 1 person come from a facility, about 2 years ago now.
We have recently concluded that this person’s needs would be more effectively supported at a group living site that has people that are more independent. Initially, this person was placed at a site where nearly everyone else requires significant personal supports because that is where we had the vacancy at the time and it was an appropriate location for her to first experience community life.
We have received a request from the Ministry indicating that any transfers of people from facilities must be approved in advance of the transfer (which I was not previously aware of). They want an update to the original support plan, a rationale, staffing details, etc., etc.
We have provided a rationale which is rather straightforward and have now received a subsequent request for all this additional detail. It seems inordinately intrusive to me and certainly is not a position MCSS takes with anyone else we support being transferred.
I have asked that they rely on our ability to ascertain, with the person, what changes need to occur relative to their needs being most appropriately met.
Why the excessive involvement?
H) The third resident jus moved into the home we designated for the facility initiative. As in the case of the other two residents, there have been no complications. All seems to be going well with all three individuals, and their families seem to be very pleased. We are not anticipating any more residents, even though we have indicated that we are willing to service more people.
I) Re. Facility initiative nothing new since last time you checked in with us. Again thanks for your ongoing involvement and advocacy on our behalf.
J) Like Ontario Deaf Blind Services our agency is a “niche” specialty service. We offer developmental services in a visual language environment using primarily sign language for Deaf users. We accepted people during the closures of D’Arcy Place, Prince Edward Heights and the downsizing of HRC and attempted to participate in the latest initiative as well. The process for the latest initiative was among the biggest disappointments I have experienced in my 30 years in Developmental Services. The Ministry clung to the model of community of geographical origin which is usually inappropriate for Deaf people in general unless they are being returned to a Deaf community. In particular, we were frustrated by our inability to speak directly with consumers in the facilities and their families who likely have no knowledge of the availability of specialized services outside their home communities. The doctrine of Core Services that was discussed in one of MCSS’ previous policy documents, Challenges and Opportunities, suggests a better approach to the problem of providing appropriate and specialized services for people whose home communities are deficient.
As you may be aware, in the 50’s some Deaf children were institutionalized in facilities for developmentally disabled people as a result of being incorrectly diagnosed as “mentally retarded” due in part to their challenges with communication. I would suggest that the epithet could be fairly applied to the process imposed by corporate MCSS in this latest and hopefully last initiative.
K) Quick Notes: Five people were repatriated. Regional Placement Facilitator and Area Office worked cooperatively with the agency. Placement Coordinator Assistants at the facilities were very welcoming to agency staff and shared good knowledge about the individuals. Information packages received from the facilities were detailed and if we required extra information it was promptly provided. All of the moves went smoothly.
Three people have reconnected with their families and the families are activity involved in the lives of their children. One of the families had not seen their child for 22 years and now visit regularly.
One person had a health challenge not identified by the facility, within a week of arriving at our agency we discovered that he had cancer. He is being closely monitored by his doctor and has settled well in to his new home and life style. He volunteers at the Chamber of Commerce, shredding paper.
One person has on going health challenges, but enjoys being out and about in the community.
The funding was appropriate and sufficient for each person.
Overall a positive experience for everyone.
L) These are the best of times:
M surprised us all! His transition and move from RCC to *** went very smoothly given the fact that pre transition type visits were not possible due to the great distance. From the first moment he arrived, it seemed liked he had always lived here. He snuggled right into his new lazyboy chair and has been enjoying the freedom to move around in his new home. He had spent the majority, if not all of his days including his meal times in his room alone, and slept in an adult crib. He now has his favourite spots to relax around the home and loves stretching out and sleeping in his comfy new hospital bed. His wheelchair which causes him to squirm with discomfort has been re-assessed and a new form fitting chair is on the way. His sister is thrilled for M and loves his new home.
L and D have lots of opportunity to get out and meet new people, as well as reconnect with some old friends who previously lived at SRC. Their families are very happy with their new lifestyles and thrilled with the opportunities to drop in and be together. They both absolutely love Friendship group, Snoezelen and attending the dances. Whether it’s the Ladies Auxillary or Harmony in Action dances at the *** Complex they have become quite the social butterflies and flirts! D surprised us by beginning to speak using short phrases and she is now on a fraction of the pain medication she was discharged with. The screaming that she was receiving heavy doses of medication and prn’s for was in fact communication based.
A’s relationship with his mom is so wonderful to see. She is still so happy and greatful that that A is so close to her and she can now see him so often. A is very proud to bring his mother flowers for mother`s day! Last week A went to a local ceramic shop and painted a mug for his father for Father`s day…Very proud of his work.
D has adjusted very well to his new life… Music Therapy and Snoezelan on a weekly basis are his favourite things to do. D`s mom lives in ***(USA) but she has been very involved and supportive with all of the new things happening in D`s world. This has been a major breakthrough for her.
R has reconnected with is sister R. Last month he and his house mates were invited to her home for an evening of festivities. R`s birthday was last week and his sister came to his home for a BBQ… This meant the world to R.
D is settling into his new life very nicely. His personality and sense of humour are surfacing more and more each day. He is learning to prepare his own small meals and helping himself to drinks and coffee whenever he likes…This is so great to see….He visits his mother in *** on Sundays and they are connecting after many years of being separated. His mom’s health has been failing for some time and she had been unable to visit with her son.
L has increased independence, enjoying full access to his home. Making his wants and needs known with crystal clarity. Helps himself to snacks, coffee and enjoys helping staff with several household tasks. He recently started attending gymnastics once a week with day supports and he absolutely loves it, especially the trampoline. He is never as animated as he is at the gym!!!! He thoroughly enjoys his monthly visits from his brother and nephew!! His brother is very pleased with the medical and dental follow through and feels L is happy and getting the best care ever. This was a fellow who would sit curled up on the couch for much of his day, hoping not to be noticed or in the way of anything unforseen.
Despite some challenging times, M has grown tremendously in the past year and a half. He is a happy and fun loving guy who is learning to communicate with others more positively and effectively. He is able to work out difficult or frustrating situations with the support of his team and has grown in his ability to be tolerant. He really enjoys spending time with his family on a weekly basis at their church meetings. M also enjoys helping out with household tasks and loves having full access to his community. Always excited to venture into town to do grocery shopping, attend appointments, or just for coffee. He enjoys meeting new people while out and about and recognizes new friends when he sees them again. This is a fellow who endured 4 point restraints up until the time he moved to his new home…
J is walking daily! He arrived slumped over in a wheelchair, barely interested in life. He now enjoys his times to be up and about and times to take it easy in his very own lazy boy chair. J is reconnecting with his brothers, sister and dad and sees his family on a bi weekly basis. That would have never happened if he didn’t come to live in the community. His siblings are extremely happy to be connecting with their brother after many years of being disconnected. J was identified as a picky eater and relied heavily on food supplements to maintain a healthy weight when he arrived. Now due to having his teeth fixed and proper dental care, as well as modifying his meals, he no longer needs these supplements and is a happy, healthy man.
W is going on his first train ride next week- a dream of his forever. He talks to his Mother pretty much daily or at the very least 3 times per week. When he arrived we were cautioned that he could be aggressive. In exploring his health it became apparent that this was pain related. With effective pain management put in place this is GONE. His Mom has had some very severe health issues this past year and has had surgery. W is now going to visit his mom at her home so she doesn’t have to leave her home. This has been very helpful to her and she is so very happy that he has become such an integral part of her life. If W was still living at the facility this level of connection wouldn’t be possible.
H who is turning 70 today, has met a favourite man thru visiting with a group of friends at her local Tim Hortons. She invites him to join her for dates, like going for coffee or a cooking class at Strawberry kitchen. Spending time with him always brings a beautiful smile to her face. This is a lady who came with a reputation of being cranky and obstinate.
M came with a strong interest in going to church. This dream has come true. She has even purchased her own bible and is very proud of it. She has joined a church in *** where the services are very animated and there is lots of singing. M’s big smile and hello’s for everyone have drawn a lot of people to her and she is greeted each week by many. She loves to go to the church social following mass for coffee/dessert and fellowship and is very popular there.
B’s family has agreed to having us rent a convertible car for cruising around and going to the dairy freeze for a bit of days gone by. This is going on today! B is 67 years young and when he arrived we were told he might not have a long time to spend with us and that he slept most of the time. It took B many hours to eat a small meal and we were told he was a fussy eater. At his first dental appointment it was found that he had a number of abscessed and cracked teeth which were causing him great pain. All of his teeth had to be removed. There was an immediate change in his demeanor. He has perked up, loves to eat and more than anything loves to keep the girls on their toes! His nephews have brought their families into Uncle B’s life and have embraced his housemates as well. This is truly a story of a family re united and one who wishes they had known this could be an option many years sooner.
C has found paid employment at Little Ceasar’s Pizza – he LOVES his new job! He is an active man who contributes throughout the Association and has made many new friends. Last year he was awarded the Outstanding Acheivement Award for the Central Area. He has made a trip up to Toronto to the Legislature. His brothers keep connected by phone and internet as they have both moved out west for employment. Saving for a trip out for a visit is a future goal for him. They are confident that their mom would be very happy with C’s move to his new home and wish she could be here to have seen him make this transition so successfully.
D and his good friend T moved from the facility into a new home together and planned a trip to ***(USA) to visit D’s mom and brother who now live there!! It was an incredible experience for the guys and family and a dream come true for D’s mom who can no longer travel due to health issues.
Now for some of the major concerns that became apparent:
The incidence of dental neglect is staggering. People have endured years of pain due to poor dental care and then there is the cosmetic aspect of it all. None of us would accept this standard of care for ourselves.
People with serious psychiatric issues, who are unstable and on extensive drug regimes have not been seen by a psychiatrist for 10 or more years.
Medical follow up that would be insisted upon for anyone in the community is not followed up or initiated. Based on the premise that it doesn’t seem to be bothering them…
The orientation that community staff received at SRC was almost non existent or filled with inaccuracies in many cases. This was highly dependant on who the SRC staff was and who the supervisor was.
Equipment such as wheelchairs were consistantly uncomfortable and poorly set up for the person’s individual needs. Some chairs were unsafe and caused injury to the person or were difficult for the person to maneuver thus limiting their freedom.
Medications were sometimes changed just prior to discharge because they were not covered. In one case very severe seizures resulted. The drug had been changed without consulting with community staff and when the community doctor submitted for a special approval for this drug this was granted.