V has been in self-directed adult services for 4 years now, and each year has been different from the previous year.
Most recently, I decided to discontinue participation for her in Fitness for Health sessions. V went there once or twice a week for two years, but never seemed to buy into it. There were times that she gave a good 45-50 minutes of hard work and seemed to enjoy the activities and other days that she refused to even get out of the car when she arrived at the facility. Most often, we could get her to go inside, and she would participat for 10-20 minutes and then head for the door and want to leave. We had a variety of trainers with different approaches. The first was quite authoritative and had a lot of conflict with our support staff about who was in charge of V. Other trainers were more easy going and gave more choice and flexibility to V, welcoming the support of her staff. Our behavior analyst went out to the facility to observe and make recommendations on several occasions. We used a portable DVD player as reinforcement for a while and then eliminated it when it caused more trouble than it was worth. Stickers were offered as rewards for completed activities, but became too much of a focus. Breaks were given to rest in between activities. The Dynavox speech output device was used to model how to appropriately ask for a break or snack, to choose which activities to do, and to request to leave. Nothing really turned things around. It was a 30 minute drive each way and the cost has risen to $110 per hour, from $100.00 per hour. Parking at the facility was difficult in our large Suburban. The garage was hard to maneuver in, and resulted in damage to a mirror on our vehicle, and the outside parking was very limited and tight. When Natalie, our most recent trainer, resigned, V was assigned a different trainer who could not meet with her every week at her designated day and time because of an assignment to work with a school group on alternate weeks. Since V has different staff on each weekday, having to change the day of the week for her Fitness for Health appointment from week to week would have made consistency difficult. I asked for a different trainer who could meet every week on the same day and time, but more than a week went by without any response to the request. I decided it was time to let go of Fitness for Health and move on. We had recently hired an excellent occupational therapist who was getting an hour of happy cooperation from V every week, from her very first visit, and continues to do so. She works on all the same goals as Fitness for Health and more and comes to our home every week at the same time so there is no commute or transition from the car to a facility. For the summer, I will increase her sessions to twice a week, in place of the Fitness for Health session. If she were available, I would have her come twice a week all year, but she can't fit that into her schedule, as she works at an elementary school during the school year, and a clinic as well. I still think Fitness for Health is a great program with wonderful staff, equipment and facilities, and I appreciate the commitment they made to V even when it was difficult. Ultimately, I felt that continuing to push V to participate in something she was so resistant to was not in the spirit of self-direction of services, especially when there are other ways to meet her needs that don't stress her. The benefit vs cost was not working anymore.
Our Special Educator wasn't clicking quite as well with V as the speech therapist or the occupational therapist. I tried an observation of the Speech Therapist and by the Speech Therapist to get some ideas going, but V seemed to become frustrated and agitated with that individual, although he was highly qualified. Was inconsistency due to frequent absences a reason or was it just not a great personality match? I tried to stay out of the room so as not to be a distraction and to get some feedback from the support staff about what they thought was causing V to get upset. Their conclusion was that she responded better when a variety of materials were prepared and brought by the O.T. and S.T, so that if she were uninterested in one activity, they had something else ready to offer. The educator was bringing a much more limited number of activities, and so was unable to offer alternatives to V if she rejected one. The other observation staff made was that V needs physical space when she becomes tense, and the educator was not giving her enough space at those times. After 7 months I decided that it was time for a change. We have a new educator now, and we will see if that works better for V. I have shared the observations of what works best with the new educator, and experienced staff are supporting her as well. She doesn't get the same enthusiastic response yet, as the S.T. and the O.T., but it may come with time.
In the past, we had adapted aquatics. V used to love the pool and water of all kinds, but then seemed to become reluctant to get in the pool. We had a lot of trouble finding an instructor, then had a great one for 6 months, but then lost her due to an increase in her hours at her other job. After that, I had no success finding another instructor and finally just took adapted aquatics out of V's plan of care and budget.
Community outings used to include shopping for produce at Whole Foods with a picture symbol list of items to find and buy. That worked well for while, until V discovered the frozen food section and kept wanting to buy 2 or 3 frozen pies instead of shopping for fresh produce. She hasn't been to Whole Foods for a while. I will probably send her to Lewis Orchard over the next couple of months, as their selection tends to be much more limited to items that I would want her to identify and buy.
The option to move funds from one part of the budget to another through a budget modification or plan modification, has allowed me to change the program as needed to meet V's needs and preferences. The ability to hire and fire staff and vendors has allowed me to find better matches to V's personality and interests over time, to include more things in her routine that work well and eliminate those things that don't. I expect that her program and activities will not look the same this time next year as they do today. That is probably a good thing and what is so great about an individualized program. It is constantly evolving to meet the needs of the person.
Most recently, I decided to discontinue participation for her in Fitness for Health sessions. V went there once or twice a week for two years, but never seemed to buy into it. There were times that she gave a good 45-50 minutes of hard work and seemed to enjoy the activities and other days that she refused to even get out of the car when she arrived at the facility. Most often, we could get her to go inside, and she would participat for 10-20 minutes and then head for the door and want to leave. We had a variety of trainers with different approaches. The first was quite authoritative and had a lot of conflict with our support staff about who was in charge of V. Other trainers were more easy going and gave more choice and flexibility to V, welcoming the support of her staff. Our behavior analyst went out to the facility to observe and make recommendations on several occasions. We used a portable DVD player as reinforcement for a while and then eliminated it when it caused more trouble than it was worth. Stickers were offered as rewards for completed activities, but became too much of a focus. Breaks were given to rest in between activities. The Dynavox speech output device was used to model how to appropriately ask for a break or snack, to choose which activities to do, and to request to leave. Nothing really turned things around. It was a 30 minute drive each way and the cost has risen to $110 per hour, from $100.00 per hour. Parking at the facility was difficult in our large Suburban. The garage was hard to maneuver in, and resulted in damage to a mirror on our vehicle, and the outside parking was very limited and tight. When Natalie, our most recent trainer, resigned, V was assigned a different trainer who could not meet with her every week at her designated day and time because of an assignment to work with a school group on alternate weeks. Since V has different staff on each weekday, having to change the day of the week for her Fitness for Health appointment from week to week would have made consistency difficult. I asked for a different trainer who could meet every week on the same day and time, but more than a week went by without any response to the request. I decided it was time to let go of Fitness for Health and move on. We had recently hired an excellent occupational therapist who was getting an hour of happy cooperation from V every week, from her very first visit, and continues to do so. She works on all the same goals as Fitness for Health and more and comes to our home every week at the same time so there is no commute or transition from the car to a facility. For the summer, I will increase her sessions to twice a week, in place of the Fitness for Health session. If she were available, I would have her come twice a week all year, but she can't fit that into her schedule, as she works at an elementary school during the school year, and a clinic as well. I still think Fitness for Health is a great program with wonderful staff, equipment and facilities, and I appreciate the commitment they made to V even when it was difficult. Ultimately, I felt that continuing to push V to participate in something she was so resistant to was not in the spirit of self-direction of services, especially when there are other ways to meet her needs that don't stress her. The benefit vs cost was not working anymore.
Our Special Educator wasn't clicking quite as well with V as the speech therapist or the occupational therapist. I tried an observation of the Speech Therapist and by the Speech Therapist to get some ideas going, but V seemed to become frustrated and agitated with that individual, although he was highly qualified. Was inconsistency due to frequent absences a reason or was it just not a great personality match? I tried to stay out of the room so as not to be a distraction and to get some feedback from the support staff about what they thought was causing V to get upset. Their conclusion was that she responded better when a variety of materials were prepared and brought by the O.T. and S.T, so that if she were uninterested in one activity, they had something else ready to offer. The educator was bringing a much more limited number of activities, and so was unable to offer alternatives to V if she rejected one. The other observation staff made was that V needs physical space when she becomes tense, and the educator was not giving her enough space at those times. After 7 months I decided that it was time for a change. We have a new educator now, and we will see if that works better for V. I have shared the observations of what works best with the new educator, and experienced staff are supporting her as well. She doesn't get the same enthusiastic response yet, as the S.T. and the O.T., but it may come with time.
In the past, we had adapted aquatics. V used to love the pool and water of all kinds, but then seemed to become reluctant to get in the pool. We had a lot of trouble finding an instructor, then had a great one for 6 months, but then lost her due to an increase in her hours at her other job. After that, I had no success finding another instructor and finally just took adapted aquatics out of V's plan of care and budget.
Community outings used to include shopping for produce at Whole Foods with a picture symbol list of items to find and buy. That worked well for while, until V discovered the frozen food section and kept wanting to buy 2 or 3 frozen pies instead of shopping for fresh produce. She hasn't been to Whole Foods for a while. I will probably send her to Lewis Orchard over the next couple of months, as their selection tends to be much more limited to items that I would want her to identify and buy.
The option to move funds from one part of the budget to another through a budget modification or plan modification, has allowed me to change the program as needed to meet V's needs and preferences. The ability to hire and fire staff and vendors has allowed me to find better matches to V's personality and interests over time, to include more things in her routine that work well and eliminate those things that don't. I expect that her program and activities will not look the same this time next year as they do today. That is probably a good thing and what is so great about an individualized program. It is constantly evolving to meet the needs of the person.
