Susan's Blog

Monday, December 23, 2019

More About GHOST

While on my bike ride the other day, I had a revelation about how to begin implementing GHOST, which I first described in Psychology Today. First I came up with what the acronym means: G.H.O.S.T: Group Home Oversight & Support Team. The way it would work is, the parents and guardians of group home residents swear an alliance of the soul with each other and vow to check in on the others’ child in the parent’s absence/death. Weekly visits. And if you can’t, you must get someone else who gives a shit to do it in your place. I don’t know what the incentive would be since we don’t all have trust funds for our guys. Is saving/enriching a life enough motivation? In effect our group home peer families become “Ghosts” for us?

G.H.O.S.T. FORM (Group Home Oversight and Support Team)


Loved One’s Name____________________________________________________

Ghost’s Name________________________________________________________


Date of Last Visit____________________________


  • What was the overall demeanor of _________________________________?
  • If you looked in his room, what was its condition?
  • What was your interaction with the loved one like?


I love it!
It’s a lot like I and others do at my grandmothers nursing home.
You get to know some other residents and their families. You include others in your visit/conversations.

More for everyone to look forward to, and staff see you’re invested in the entire population.

With that said… I have decided to continue the plan of never dying.

— added by Jacquie on Thursday, December 26, 2019 at 1:00 pm

I like the idea, but not everyone in my son’s group home is as involved as I am. The other problem is that the parents I know are about the same age & are probably going to die or become disabled at about the same time. I wonder if this idea could work if older folks do SPED advocacy for younger overwhelmed parents in return for watching over our loved ones after our deaths. Anyway, the problem is real, and this solution is worth thinking about.

— added by Irene Tanzman on Friday, December 27, 2019 at 11:35 am

This is the most daunting issue that haunts all of us
“Exceptional Parents”. I wish the expression “it takes a village”
would apply to all of our adult children not just the model high functioning
individuals who are most visible in the community.

— added by Faye Ginsberg on Saturday, December 28, 2019 at 6:53 am

Brilliant! I’ve been trying to think about a way to do this down the road, can’t wait to see how it works out for your guy.I’ve already worked on my nieces and nephews to help oversee his care when his dad and I are gone. Love this idea!

— added by kim mccafferty on Monday, December 30, 2019 at 9:50 am

You are way ahead of us!! Great job!

— added by Susan Senator on Monday, December 30, 2019 at 10:15 am

I could imagine doing a lot of advocacy and oversight for others & then when it became my turn, it is possible that I would not get the same for my son. If I’m no longer around, I certainly couldn’t do anything about it. What would prevent this from happening? After all, this job is really supposed to be done by the DDS, but they don’t actually do it, & the general public doesn’t really hold them accountable.

— added by Irene Tanzman on Monday, December 30, 2019 at 11:09 am

You’re absolutely right, Irene. But what else have we got? We might as well try!

— added by Susan Senator on Monday, December 30, 2019 at 11:35 am