Has anyone had to look for a group home for a special needs child?

My sister transitioned away from home at 50 yo. My parents never wanted her “labeled” with a disability, so she does not qualify for government support although she functions somewhat similar to Down Syndrome. So the group support she receives is different, all private pay. My mom had investigated available group living supports in FL, chose five, and we drove around FL to visit each, meet staff, view how it functioned.

A friend whose daughter has a child with a disability moved her daughter to a government support group home when she was about 20. This mom also loved the time with her daughter so when she started at the group home, I believe, she only stayed a couple of days a week for maybe 3-4 weeks. They added more days. She continued to spend weekends at home for quite a while. Now, about 7 years later, they still take her shopping or out to lunch. Visiting overnight at home is very infrequent. The young woman with a disability adjusted well to the group home, found a best friend, and does not object to staying in the group home. Of course, no later how few days she was at the group home, the cost was the same as if she were there 24/7 as the home needed to hold her room and have enough staff.

@triciaot Thank you for your reply, it’s nice to know that your friend’s daughter made a good adjustment, a few days at a time worked well for her. How is your sister doing ?
I am also in the process of seeing a lawyer to have our middle son who lives near us appointed a Co-guardian so that if something happened to my husband and I at the same time, he would not go through the court system to get guardianship. There’s a lot to think about when you get older. We already have a will with a Special Needs trust in place.

@emyliander My sister is doing well! I have power of attorney for financial and healthcare, but not guardianship. Technically she can make her own decisions, but really she does not handle any big issues. My nephew also has legal documentation to take over as POA when I no longer can do it. There is a trust in my mother’s name that my sister is sole beneficiary that I oversee. The hope is that it lasts!!

There is a lot to think about! Its good that you will have the legal work done for your son to help out if needed. My older brother had been managing my sister’s care but was diagnosed with stage 4 lung cancer last year so we transitioned her care to me. That was a lot of work!

I think you are a very loving mother to want to ensure your daughter’s well being, and it would be so much better for her to have time to settle into a new home rather than it happen suddenly. My father had a brother who had special needs and when my grandfather passed away and my grandmother was left, at an elderly age, to care for him the family gathered and came to the same conclusion as you have. My father became his guardian and he was moved to a group home with others similar in age. While it was a difficult time for my grandmother to see him move out, she had the peace of mind in knowing he was comfortable in his new home and my father and the other siblings helped her to care for him by visiting with him and seeing to his needs even long after she too passed. I hope this helps you to see you are thinking of this for her for all the right reasons.❤️

@triciaot I’m so sorry to hear of your brothers illness. Two of my brothers had cancer, it’s a hard illness to deal with.
Thank you for reminding me about the POA transfer when needed.
Do you find , by the time the home takes their fee, that you have enough money left for her personal needs and some wants, or is this where the trust money comes in ?
Was it hard to find a home that you or your mother felt good about, I know Im not going to find a place that meets all my expectations and I realize that things that would bother me, Kim wouldn’t care about.
I’m meeting with her Care Coordinator probably this or next week , to do the paperwork to get her name on the waiting list, which is about a year long. More paperwork 😳

You are very kind, I do feel, not guilty, but worried that she will feel the insecurity that she felt as a two year old coming to our home after being in an orphanage then to an adoptive home, then to a foster home, then another foster home and then to us, all in a span of 2 1/2 yrs. That’s a lot to overcome when you can’t even express your fears and feelings. Of course now she is a lot different and is happy to go anywhere with anyone—that she knows. Of course we will visit her and bring her home for a week-end after she gets settled. Her brother also will visit frequently.
Thank you for your input.

@emyliander My sister does not get government support. She was not labeled with a developmental disability when she was young, although she was. My parents did not want to put a label on her - their hopes and wishes were that she would do more than the specialists said she could do. Her IQ is somewhere between 50-60 the variance depends on the task. She is a whiz at remembering phone numbers, but does not understand where money comes from, and cannot remember or complete multi-step tasks. Lack of oxygen at birth left her with something closer to traumatic brain injury functioning.
The doctors at Univ, of Miami Mailman Center said that testing showed she would never live on her own, one went so far to say she should be put in a facility right then. My parents didn’t accept the testing results. She always went to private schools so a disability label wasn’t required. My mother gave up her life for her; my parents never spent money on themselves - that is what is paying for her care now. It was a loving thing to do, but it hurts me to know my mother had so little, no vacations, etc.

@emyliander You asked about my sister’s group home . . . I put the link to their website below. Although its probably not what you’re looking for, sometimes comparisons help!
My mom had a difficult time making a decision on a place for my sister. I believe she was down to three options, the other two seemed more restrictive but had been around for a while. The Foundation for Independent Living had recently been started by parents, was run mostly by parents, albeit very dedicated ones! It was a leap of faith to choose this one. Its been 15 years now, there’s been a few bumps with changes in the leadership, and costs keep going up, but it seems like it will be there for a while.

Mom was happy with the decision. With encouragement from staff, my sister gets involved in the offered activities. She placed in the statewide Special Olympics in bocce this year.

When we had the lawyer change the trust management to me, he created a power of attorney for my other two sisters as well, just in case. They declined managing the trust, but by having the option for them to make decisions on her care or health it was a good way to make sure we don’t end up in an emergency if something unexpected happened to me. It was also less expensive to just do it all at once. They may never need to use the poa, but its there in case. I have signed copies of all poa(s).

Foundation for Independent Living, Florida (near Ft Lauderdale)
https://filinc.org/