Considering group home

Leslie - posted on 05/21/2010 ( 11 moms have responded )




I would like to know if there is anyone who is in the process or has placed their young adult child in a group home? Our daughter is 20 w/Rett Syndrome, we have considered a group home when she is 23, but we are feeling guilty just considering the option. I would like to hear from others in this situation.


Julie W. - posted on 05/23/2010




When I divorced in 2003, I placed my now 25 year old son in a long-term care facility. He was 17 at the time. It was a long, hard and thought-out process but I was unable to physically care for him anymore.
My son has cerebral palsy with very low muscle tone, is nonverbal, in diapers, doesn't know how to communicate his toileting needs, can't do anything for himself and when we raised him at home, he never slept through the night. Most of the day to night care fell on me and as a result, I gained a lot of weight, felt depressed all the time from the lack of sleep and lost sight of myself in the process.
I was and still am deeply attached to Alex and bring him home every weekend for the day and sometimes overnight. He loves all the attention I give to him as I read stories to him, sing and play my guitar his favorite nursery songs and we take him out for walks in his wheelchair.
Specialists claim he has the mind of a toddler but explain to me how he loves watching golf and baseball on TV as I've never met a toddler who enjoyed watching golf.
Before you place your child in a care facility, GET YOUR DAUGHTER CONSERVED AND ESTABLISH A SPECIAL NEEDS TRUST. ALSO BE YOUR DAUGHTER'S REPRESENTATIVE PAYEE so you can manage any funds she gets from Social Security.
There are 6 clients total in the house managed by a Phillippino couple and only my son and another client are conserved by their parents. The adults who are conserved by the state are treated without dignity -- over-medicated, haircuts shaved half-assed, left in front of the TV or in their rooms all day without any attention.
If she has a case worker with the Regional Center, find a day program she can attend which will offer stimulation M-F. Find one that offers outings on a weekly basis.
As far as wrestling with guilt, I do all the time. But then I think to myself that any non-disabled adult child would be moving out at this time of their lives and as long as you stay very involved in your child's life, that's what counts the most.
As I have had to do several times, spy on the facility in that don't just accept that they are doing everything they should be doing. I've had to involve our county's ombudsmen several times and when the home first opened, I had my special needs attorney advocate for my child as they kept stating on his paperwork that he had behavior problems which my son is incapable of having.
Whatever you decide to do, my best to you and your family. It's a very difficult process and my heart breaks every time I have to take him back but I also know that I'm not physically able to care for him 24 hours anymore and that it's good for him to be around other people as well.

Stephanie - posted on 01/03/2012




i am also considering placement of my 18 yr old special needs daughter she is total care we have respite on the weekends and she attends school during the week. She is much better behaved when she is in the care of others, but i still feel guilty about placement i guess i feel like she is my responsibility and i should be the one to take care of her,i wish it was a easy decision to make.

Nancy - posted on 05/25/2010




I couldn't do that when my son was 20. I don't know your situation, but letting go is the hardest thing a parent has to do. Eventually, I did place him when he was 36 years old and feel it was better for him than for me. I tell myself that everyday in order to live without him at home. He still wants to be home and my heart wants him here too. Good luck in whatever you decide. It has to be what is best for your child overall.

Iridescent - posted on 05/21/2010




I haven't had to face that end of the situation. I have provided care in them though. Some, I would avoid with a passion. Others are excellent, and if the need arose I would have no concerns with my child living in them. Ask people in the community about the specific group home you are considering. Current and former employees. What is turnover rate? Tour the home - does it smell good? is it well cared for? are the residents and their belongings well cared for? does each person have their own area and it suits their personality? do they have to share bedrooms or not? what is the med error rate? have any VA's been filed against the facility (find out through social services)? do they provide day activities other than television? do they work with a local developmental achievement center? what about therapy and appointments? what training is required to work there? and the list goes on...

Trish (Bullard) - posted on 05/24/2010




Our daughter is 18 years old and an only child. We live in a rural community with not a lot of resources. Four years ago we made the hardest decision ever by sending her to a residential school 80 miles away. She loves it! She comes home every weekend and you can tell she's ready to go back by Monday morning. Although it breaks my heart sometimes we've done what was best for her and it's shown us that she needs to be with other young people, therefore at age 21 when she can no longer go to school she will move into a group facility (closer to home). Good luck with your decision.

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Jeanette - posted on 05/31/2010




it is a very hard decision to make and one that i will be in my self in a few years. my daughter is 9 yrs old and has epilepsy and severe global developmental delays, as well as other medical problems. when my partner first mentioned it a few years ago i completly freaked out on him. however as time has gone on it is some thing that i have again began to consider. it is not only for my benifit as because as she is getting older she is getting more diffucult to look after. due to her problems she cannot walk ,stand unaided, bath her self and she has to wear pads. i think that she possably would benafit from it as well (getting away from fussy mummy for one lol) but i think that it is some thing that you have to asses and also look into very carefully if you are considering it. do some research into the local homes etc in your area. talk to other parents if possable whose children are also in any of those facilaties in your area. good luck and i know you will make the right decision for both you and your child xx

Sharon - posted on 05/31/2010




My son is twenty (Down Syndrome) but we think we are going to keep him home for 3-5 more years. I look at it as we aren't going to be around forever and they need to see life different then living at home.
He is going to be at the public school for one more year-I really think he isn't benefiting from it. We have a school for special education children-they have a work program, plus they teach cooking, shopping, basic budgeting. So the following year he is going there until he turns 25.
Young adults without disabilities move on and out of our homes, I think our kids desire to do the same. It is healthy for them. It is good that you are thinking about it now and moving toward moving her out in three years. It is sure a whole lot better than getting angry and saying "you are out, don't let the door hit ya on your way out." Some parent do that, unfortunately. You are doing the right thing! Sharon

Leslie - posted on 05/26/2010




Thank you, Ladies! Lots to consider and research, I appreciate everyone's thoughts.


Jaette - posted on 05/23/2010




My daughter with Rett is 23 and at home with us. We have support persons that come in so that my husband and I can work and occasionally we both go on a date (mostly to home depot) Actually, my older daughter is currently living with us due to job seeking after college by her and her 'apartment seeking' friends. Siri also is in a day program Mon. - Thurs. that has about 6 young women with Rett Syndrome. I volunteer to play for the program 2 times a month. As Renee mentioned, and I agree, there are many different options then just group home living to check out. There is the day program to give all a break, there is also respite, in home or out of home. I checked out about 18 day programs before I finally settled on one. Do not have 23 as a hard and fast year to group home your daughter. Changes take time. One friend with and older daughter with Rett started by having her go to out of home respite for weekends to see how it went. All of her sibs were going to college and moving away, so she seemed to like this idea (judging from reactions)

Renee - posted on 05/23/2010




I'm a person with a disability as well of parent of Nigel with multiple disabilities.Does your child have a waiver that would cover her living in an apt with a live in caregiver instead of a group home?I'm an advocate for home and community based services but group homes are often run like mini institutions.My late husband was institutionalized 25 yrs in GA's largest institutions..Leonard said group homes reminded him of instutions.All caregiver turnover is high.In a live in situation there's continuity of care real relationships.
I was his live in caregiver for 10 yrs before he passed.Don't let youyr state tell you it has to be a group home.Our plan for nigel is an apt with a live in companion/caregiver.

Cherish - posted on 05/22/2010




My son is almost 8,and I understand the guilt we feel as parents.
Here in CO there is a LONG wait list,we were told to put him on it now,so they can place him when he is 21.
I have not yet done that.
Parents do need a break for sure,and maybe our children want to live in a group home.
My son does not speak,but I can see where being around me all the time is

Do not feel bad,for placing her in a a group home.
If you are like me and many other parents maybe a group home can provide her with more attention and activities.

Have you looked into day treatment programs?
It takes a village to raise a child and a exceptionally large one to raise kids w/special needs.

This article is helpful for what to look for in a residential care facility

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