Imagine you are a 35-year old man with a developmental disability. You live alone, have a part-time job, and receive some personal care and Residential Habilitation ("Res Hab") support through OMRDD's Home and Community-Based (HCBS) Waiver.
One night when you are chopping lettuce for your dinner salad, you accidentally cut your finger with the knife. After applying a cold compress and pressure for a while, you realize that the cut might need some stitches. You get a neighbor to take you to the emergency room, where you get three stitches to sew up the cut. It all heals up within two weeks.
Three weeks later you make an offhand remark to your service coordinator that you had cut your finger and had to go to the ER. The service coordinator informs you that under OMRDD regulations, your cut finger is a "serious reportable incident" and even though you had taken care of your own needs and your finger was completely healed, she will have to report the incident to the Broome Developmental Disabilities Services Office (DDSO), the county Department of Mental Health Legal Services (DMH), and the Commission on Quality Care (CQC).
Additionally, an investigator will have to be assigned to look into what happened, why it happened, and what has been done to correct the situation. You get very angry and say, "I can take care of myself. I don't need those people butting into my life for no reason. I don't want you to tell anyone." The service coordinator sighs and says, "I'm sorry, but I must, and I must spend a great deal of time filling out lots of forms so my agency doesn't get into any trouble."
Imagine:
You are a parent of a seven-year-old child with significant developmental disabilities. Your family receives support under the OMRDD Waiver to assist with personal care, as well as many other services.
One day when your child is playing on the floor, she pulls on the tablecloth, causing a bowl to fall on her head. You immediately take her to the emergency room, where x-rays are taken and other tests run, with the end result being that no damage/injury is found. Given a clean bill of health, you take your daughter home.
A couple weeks later you're chatting with the Res Hab worker, and you tell her what happened. You say that you no longer leave the tablecloth on the table (except for dinner) and you've gone through your house to make sure nothing similar could happen elsewhere. The Res Hab worker tells you that, unfortunately, she must report this as a "serious reportable incident" and will have to notify her supervisor and the Executive Director of her agency, the Broome DDSO, DMH Legal Services and CQC of the incident. They will then have to conduct a full investigation of the incident. Very distraught, you say that you've done all you could, it was an accident, why are they investigating you? It could happen to any child of any parent! Your Res Hab worker assures you that you haven't done anything wrong, but OMRDD regulations require this and she can do nothing about it.
Imagine:
You are a parent of an eight-year-old girl with significant developmental disabilities. She is included in a regular classroom and receives many services under the HCBS Waiver. You are very active in your daughter's education, and have become highly concerned about the fact that your child is coming home with bruises and marks on her arms and legs. You report it to the school administrator and nothing gets resolved. You then inform your service coordinator about the situation and ask for help. The service coordinator immediately calls the county Department of Social Services (DSS) Child Abuse Hotline about the situation, then reports it to the police as well as documenting/reporting it as a "Allegation of Abuse". The police and DSS do not want to get involved because it is a school-related incident, so the service coordinator discusses the situation with OMRDD officials. While those officials are sympathetic and concerned, they are unable to take further steps beyond the forms and provisions outlined in regulation.
Unfortunately, this isn't just your imagination. As an agency that provides OMRDD-funded services, if we become aware of any kind of injury or situation that requires more than basic first aid, we must report it to the people mentioned above. We also do hours of paperwork, and a very time-consuming investigation process. All applicable parties must be interviewed (including the consumer, family members, witnesses, etc.), their statements taken, and all the correct forms filled out and filed. The incident must be discussed before a highly-regulated review committee at STIC, and the Executive Director must be kept apprised of all developments. In the last scenario described--the abuse at school--all of this incident reporting was very appropriate. Unfortunately, all it achieved was to document who did what, where, when and how. When it came to trying to get something done about it, OMRDD and other entities could not or would not go beyond the specifics of the regulations.
Several STIC staff and I sat through a two-hour training on how to decide what types of incidents are reportable, how and when to report them, to whom reports need to be sent, how incidents should be investigated, etc. Many of us have been through these trainings before, but I don't think we were ever struck as hard with how intrusive they are to consumers and their families, how redundant and useless most of the paperwork is, and how most of it has absolutely no benefit for consumers or family members. It serves one, and only one, purpose. Forgive my crudity here, but it is a phrase used much by government and other officials: CYA--"Cover Your Ass". Make sure no one can sue you. Make sure everyone is notified so no one can be responsible, make sure it is reported even if it happened a month ago and even if the situation was completely resolved, and above all make sure you report it even if it's against the consumer's or family's wishes.
If you are a recipient of OMRDD services you are subject to these regulations. It's like Big Brother looking over your shoulder all the time, or like having a surveillance camera following you around "for your own protection, of course". Government and bureaucratic officials say they are looking out for your safety.
Do you feel safer knowing that your cut finger is a subject for review by three government agencies, a full committee of STIC staff, and more? Does it make you feel more secure to know that if your child has an accident, that accident will be investigated and reported to many agencies? How about the fact that even if serious abuse occurs in a school classroom, all of this paperwork and oversight will probably produce absolutely no results? What does that do for your sense of personal safety?
To be fair, many OMRDD officials find these procedures and requirements as intrusive and redundant as we at STIC do. I'm all for reasonable regulations that truly help consumers who are neglected, abused or otherwise endangered. In such cases, incident reports are warranted and investigations desirable. At STIC we serve hundreds of people who receive OMRDD services. If we were to report every single incident we find out about (not just observe, remember, but also become aware of) we'd probably need to hire three more staff. Hmm. Perhaps hiring a CYA Coordinator and a few CYA specialists would resolve all of our issues?
Whether these regulations are state or federal, they must be changed! In a time when resources are scarce and programs are being cut, just think how much money could be saved if we eliminated these overburdensome requirements, and how much more real work all of us could do! And, imagine: People with developmental disabilities would be one step closer to real freedom.
