I don't generally get excited over announcements like this. I've seen plenty of grand plans be announced and then fizzle out into uselessness. This one has some real potential, I think, although it also has some challenges.
The proposal (which is being submitted for June 15th) is that families with autism and other complex needs should have help navigating the system. They are proposing to create a "point of contact" position, a single person who would be assigned to each family as a person to advise, act as an intermediary and coordinate services. A unique service plan would be created for each child and would follow/be available to any services until they turn 18. (Plans are being considered to expand this to over 18 but they want to start with something more defined to get the bugs ironed out.) There would be a new oversight agency created whose job it would be to make this work.
The organizers have asked for input from families. There was a meeting to discuss our concerns and after we got past the initial anger and frustration, we were able to put together some good suggestions:
- The agency should be tracking what services are available as well as wait times to create a comprehensive map of what is offered and where the gaps are. This will allow better allocation of public resources and aid in creating a national strategies.
- The agency and point of contact person will need to be flexible. There cannot be a predetermined one-size-fits-all plan or path. They will also have to be flexible in terms of meetings, possibly allowing families to meet over the phone or via Skype rather than only operating during daytime, weekday hours. They will also have to meet regularly with the families. Too much can change within a year to leave things to an annual review.
- The point of contact person should have the authority and ability to advocate for their families. One of the major concerns was about individual schools not providing proper support. As this plan would include the different school boards, the point of contact should be able to speak to them with the weight of the oversight agency behind them.
- The point of contact person will need to be educated or have access to a comprehensive database of programs. Maybe this could be done by having specialists in the different areas. (Pre-diagnosis, speak to Karen. School issues, talk to Dave.) Ideally, the point of contact should be able to direct families to immediate interim help while they are on waitlists.
- The point of contact person will need to be aware of and work with private agencies as well as the public services. There are simply too many gaps to rely solely on public services.
- The point of contact person needs to be a long term position so that they are familiar with the families. At a minimum, there must be an established turnover procedure to avoid losing families through the cracks.
- There cannot be an extensive waitlist to get help from this service. Ideally (and this is their plan), the point of contact person will be assigned as soon as the parents get in touch to say they have a concern. They will not require specific diagnoses in order to access this service. (Although a diagnosis may still be necessary to access different programs.)
- There should be a transition plan in place for children and families as they approach the age of 18.
- The different regional areas should be encouraged and able to share their best practices with other areas. (Each local area will have a unique oversight group and a regional plan.)
My only hesitation for this program is the current plan to assign the point of contact person from within existing agencies. This job simply looks too big to tack it on to existing duties and still have a hope of it being done properly.
As a group, our major concern was the bureaucracy. There are a large number of organizations which are participating in this process, which is encouraging. But I've seen organizations talk the talk but then turn stubborn when it comes to giving up a portion of their budget or bureaucratic autonomy. Without eager participation, this could turn into a bureaucratic turf war. The speakers assured us that everyone is very conscious of this and are actively working to prevent it.
Most of the families there were experienced families who have been navigating the system for a long time. If you have ideas or suggestions which would help newly diagnosed families, then you can contact the organizers at firstname.lastname@example.org. This is not a place to get individual help or to make complaints about services. They know the system has not been kind or helpful and they are looking to change that.
The plan is to have this agency and the point of contact people available in a year to 18 months. I'll keep you updated as I hear more.