Heads Up for those with Intellectual Disabilities on NJ’s DDD Community Care Waiting List

[Sorry for the possibly off topic post for most of you]

If this title is you or someone you know: If NJ, the DDD, or the CCW Waiting List calls you and asks if the client with intellectual disabilities would like to be placed in a group home, that means (1) you’re at the top of the list and (2) do NOT say No.

Saying No means you’ll be removed from the list. It is your right to use the CCW for increased funds to take care of said individual in the residence of their choosing – not just traditional group homes. So you can say: “Not a group home, but, I’d like to use the CCW in other ways, such as in house supports and services”.

Insane amounts of information for anyone reading this wondering what’s going on

• If you or someone you know has an intellectual disability that (1) began before the age of 21 (which isn’t the same as diagnosed before the age of 21 – just that you got it before 21 and any sane doctor would conclude yeah you must have got it) and (2) reside in New Jersey, you qualify for services from the NJ Dept. of Developmental Disabilities (DDD) once you are age 21 or higher.
• Many folks in DDD get services via the ‘Support Program’. This is a program where the state gives you a modest budget and you can use it for services that meet your need. This can be at-home supports, day programs, career training, college mentoring support, health programs, etc.
• A smaller amount of folks get DDD funding via the ‘Community Care Waiver’ (CCW) program. This is similar to the Supports Program, but has substantially more money in the budget. It’s higher so it can cover Institutional Care or Group Homes, but it’s not required to be used in that way. You could use the funding for more of those at-home or community supports.
• The CCW has many waiting lists but the only waiting list that moves is the priority waiting list, triggered under certain conditions, usually about the parents’ health and age. Despite being the only waiting list that moves, it still moves very slowly. So it’s important to get on the waiting list as soon as you can and not screw things up. Hence why this situation is all sorts of jacked up that the CCW would be mischaracterized as being “Group Home” only and using that question to disqualify status once someone made it to the top of the waiting list.