Are you AWARE of how private the services offered to individuals with special needs are? If the programs are run by the state, involved with the school system, etc. they are required by law to follow strict privacy rules. In some ways, the laws are great and at the end of the day, everyone deserves to keep their personal information private if they so choose but are you AWARE of how this hinders the services provided to individuals with special needs or really any chronic condition? Are you AWARE of the constant loopholes that service providers are constantly battling in order to get the “full story” and offer the best care for the individual?
A school keeps records. A doctor has records. I have records. PT’s/OT’s, etc all have records on one child. The school can’t see the doctor’s, the doctor can’t see the OT’s, etc. We can all make calls to each service, send emails, etc and try to get the general story or update on each individual but if you’re working with 20 plus kids in a day, week or even a month, it just doesn’t happen. It’s a constant game of phone tag, missed opportunities and so on. We all have one goal: improve the life of the child/adult and improve their condition, yet instead of truly working as a team, we’re separate and mostly because we have to be private. What we’ve done is left it up to parents with special needs to tell their story over and over again and try to remember and record keep all services provided, updates, medications, etc. on their child. All because “for privacy reasons, we can’t share that.”
Trust me, I get it and I understand that we needed to implement such privacy rules, but as a service provider, I also know how difficult this makes my job. The inefficiency of it is what frustrates me the most. We, as service providers, can spend months trying to get the full story/background on a child (and that’s just one child) and then trying to keep up-to-date with all the changes/progress or trouble areas is next to impossible to keep up with amongst each service being provided. If you ask me, we spend way too much time battling privacy hurdles and then waste even more time trying to connect with the other providers when this is precious time lost on programming and working with the children/adults.
To parents of individuals with special needs or chronic illnesses/conditions, tell your story and allow your story to be told. Help the team of individuals working with your child provide more efficient and effective care by not only allowing but encouraging communication across the board. We need your permission to move forward and offer more efficient care. I am glad that you have the option of remaining private, keeping your story your story if you so choose; but you should also be aware of how sometimes remaining private can hinder your story, your team, your plan of ACTION…
Take ACTION and create AWARENESS concerning privacy issues.