National Standards Needed For the Developmentally, Intellectually Disabled

Thank you to Governor Christie of New Jersey for signing “Tara’s Law”. This law was enacted to protect the developmentally and intellectually disabled living in community care residences (“CCR”) in New Jersey.  Advocates and families from all over have fought long and hard for this much needed legislation and I congratulate them.

Attention, along with legislation to protect one of our societies most vulnerable populations is long over due.  As the brother of a profoundly intellectually disabled individual who died in 1996, guardian of a women who is profoundly ID/DD, an advocate for people with ID/DD for almost 30 years, and President of CCMR, Inc. (www.ccmradvocates.org) a Massachusetts based advocacy group, protections for disabled individuals have repeatedly fallen short especially in the community. 

In Massachusetts, funding for the one and only “unbiased” reporting agency, the Disabled Persons Protection Commission (“DPPC”) has been cut over at least the last 10 years.  At its inception, the DPPC, had seventeen investigators and they now have two.  The number of complaints has not dropped; in fact they have risen dramatically.  As constituted the DPPC cannot meet its mandated requirement of investigating at least thirty-five percent of the cases filed on behalf or by disabled persons in MA. Currently the DPPC investigates only the most heinous of complaints and the rest are referred back to the Agency that is involved in the complaint to do an “in house” investigation.

Tara’s Law is a great start but does fall short on many levels. Based on public testimony given by a New Jersey resident, member of VOR, a nationally recognized advocacy group (www.vor.net), and sister of a profoundly intellectually disabled individual, the law falls short on many levels.  First, the law protects only one small segment of the disabled population the individuals living in the Community Care Residences which are licensed by the state and are supposed to be overseen by Case Managers.  Secondly, the law requires only one scheduled visit to each home per month with no required unscheduled visits during the month.  Third, although the law focus’ on neglect, the word “neglect” does not include care and oversight of the individual. For example, it is not considered neglect if someone who has to have their food processed or pureed because of dietary restriction and the ability to swallow whole food, is not served their food that way.  These are just a few areas that Tara’s Law falls short. 

Many advocates are in agreement, now is the time to look at protection and safety for one of societies most vulnerable populations on a national level. VOR, and several state based advocacy groups, CCMR included, agree it is time for a national model of care, safety and protection for individuals with disabilities. 

In conclusion, I believe, it is now time to not only look at a national standard of care, safety and protection for disabled people, but to look at the level of training direct care workers are receiving and consider either a national certification or at least a state level certification.  Lastly, it is time for all human services workers to undergo a national criminal background check. There are too many holes in the state CORI systems.  An individual can have a conviction of abuse in Florida but come up clean on their Massachusetts CORI. These holes and many others must be plugged so one of societies most vulnerable populations can be safe.

*******************************************************************

David Hart is a recognized advocate for people with ID/DD both on the State and Federal level.  He is the President of CCMR, Inc. (www.ccmradvocates.org) a MA based advocacy group. David is also a Board member, as well as a member of the Legislative and Government Affairs Committees for VOR, (www.vor.net), a nationally recognized advocacy group.