Courtney now has an individualized program meeting her needs!
I am the grandmother of a 23 year old with severe autism. She has no physical handicaps, requires no medication, but her thought processes are scrambled. I am an RN and have been working to help meet her needs for many years.
Courtney completed a program at Forbush School on the Autism Waiver June 2015.
Our family began looking for a Day program in November of 2013. Over the course of 18 months, we visited or were in contact with 13 sites listed on the Maryland DDA providers list.
We would have liked any of their programs. Of those we visited, some looked hopeful, then the letter stating “We are sorry we cannot meet Courtney’s needs at this time”, arrived.
One site accepted Courtney in March 2015, then cancelled her 5 days before she completed school.
The word was out that DDA policies and goals were changing and that Courtney did not fit.
All this to say that yes, it fell to the family to meet her needs 100%. We kept looking for a program because in her limited way, Courtney would ask- “school tomorrow?”. She wants to do something, and we hoped that professionals would help her meet her potential.
We entered the Self Directed Services Program June 30, 2016. Yes we are using 2 family members to run it 18 hours/week. I have been very involved with the paperwork, meetings, training, etc.. I am thrilled with the way the members have “stepped up to the plate”, are following the criteria and documenting activities and progress.
We are using many of the principles taught to us by the instructors from the Autism Waiver. Small progress is made slowly due to Courtney’s autistic attributes and some adverse behaviors, but we are working hard to meet the goals of the program.
Having worked with contracted instructors previously, our experiences were mixed. Some had a positive effect on Courtney’s progress while others “cruised along”, in some cases working toward their own career goals. There does not seem to be a steady stream of qualified instructors always available. There were some gaps in service when qualified instructors were not “in the pool”.
Scheduling was also an issue, especially during bad weather or when communication was lacking from the instructor.
Although Courtney takes readily to new people, successes have been significantly varied.
In having 2 family members trained as instructors, the program has taken off quickly. Issues such as training, time that Courtney and the instructor need to get to know each other, learning what prompts to use with her and travel time are eliminated.
We are not opposed to a professional joining in as part of Courtney’s program. Nevertheless, at this time, family members are doing an excellent job in matching activities and goals, using learned prompts, mood assessments and visual tools among other things to help her meet those goals.
I am asking you to commit to the program you have set up as it is. When the criteria are followed, it is a cost effective program that helps those who are impaired to meet their highest potential.
We are in agreement with oversight and not in agreement with anyone taking advantage of the program.