Guest Author - Bonnie Sayers
Over the past thirteen years I have dealt with a multitude of agencies that serve the special needs population. This started before an autism diagnosis was ever made on my now sixteen year old son. Before you get to that point you are visiting Doctors, Specialists and agencies to find out why your child is behaving in a certain manner or not speaking.
First impressions are really key in this environment. As the single parent to two teens on the autism spectrum I can recall many glances in waiting rooms and having to peruse over assessments that were not very kind. These were the places that we either requested a change in therapist or no longer used their services and switched agencies.
We have that right as parents to make sure that both we and the child being seen are comfortable with the professional that is providing such a service, that in most cases starts at age two, three or even younger. These therapies may be on a daily or twice weekly basis for six months to a year with weekly progress notes being sent home and to the funding source, if applicable.
Early on I was so overwhelmed after a day of assessments that was videotaped and observed through a two-way mirror with both sons that we never went back to that Hospital. There were so many recommendations to comprehend that it took two years before I requested that type of therapy for my sons.
For some therapies the parent might have to attend workshops or an orientation before funding will be approved. Parents with a newly diagnosed child are not at the same stage as parents who have been in the trenches for a number of years.
At this point in time with teen sons ready to transition into adulthood in the next few years I prefer to seek out other families with kids in similar age ranges. Some agencies will stop serving the older teen population and end services at age twelve or thirteen with some even as early as nine years of age. It all depends on what their agency specializes in.
Our experience started with the Pediatrician sending us to the Speech and Occupational Therapy Department at the Hospital across the street. The initial assessment mentioned "autistic like" behavior in a handwritten form that was barely legible.
I called after getting the assessment and requested another Speech and Language Pathologist (SLP) for the sessions. I had the opportunity at that time to speak with an SLP and decided she was well suited for our needs. A few months later my younger son started sessions with her as well.
While my sons were in Preschool and an Early Intervention Program they were having weekly sessions on the days their current programs were not held. I never understood why parents would take a child out of a 2.5 hour program 3-4 days a week for a therapy when they could arrange them all for the days off of school. For a few years Fridays were therapy day.
I wanted to share that recently I was invited to be a parent representative at any agency's corporate manager's meeting. A list of questions was sent to me that was generated from the Agency. They wanted to get my response, as well as hearing my personal history with agencies that have served both my sons over the years.
My long term goal has been to eventually speak at workshops and parent meetings to offer insights into parenting kids on the autism spectrum. I had not even considered speaking to therapists or agencies as this had not crossed my mind. I attend conferences where therapists, teachers, parents and other professionals share their wealth of experience. I buy books and magazines that have articles from these people also. It makes sense that parents share their experiences with therapeutic agencies so that the special needs population can continue to thrive in therapeutic settings, home and school.
The questions that were asked follows:
1. What do parents like to see in a website?
2. What would turn a parent off from a website?
3. As a parent, would you prefer being a part of the therapy session or view it from a one way mirror?
4. Other than quality of services, what do parents look for in an agency?
5. What resources/websites/blogs do parents use to get information?
I spent about an hour sharing from a list I wrote out covering the agencies that we have received services through. I also posted on my facebook page the questions to get a sampling from other parents as feedback.
The meeting was in a conference room with about 20 managers present, some online with a screen on the wall showing questions and the speaker phone had managers listening in from other States. The dress was business casual. I was a little nervous in the beginning. When I left I got a plant and a thank you card along with a target card.
This was a great experience discussing impressions from the family's point of view, what it is like having an array of therapists come in your home, visiting schools, the assessment process, a little about funding, age groups for therapy and camp ideas. I suggested having camp details available as soon as possible since families are already preparing for this before spring vacation, sometime even during winter break. Funding may take month and we need to know price of camp, hours as well as the types of services offered during camp.
I think more agencies should reach out to the families they serve, have support groups for the parents while they are waiting for session to be completed. A questionnaire asking for feedback on their policies and service would be helpful. Informational meetings and seminars are where these agencies have booths with their data so parents can learn more of their services.
I see tables at many events, but sometimes they have so many activities for the kids that parents cannot get their questions answered. I end up just grabbing the materials to peruse over at home. This is a lost opportunity for many agencies to meet the family or parent that might just be their next client.