When should we think about a group home for our severely disabled child

[Anonymous]

We're in the same boat. DS is also 19 and has a rare disease that comes with an intellectual disability, a plethora of medical issues, and some mild behaviors.

We hired a special needs lawyer and have talked with some organizations just to get a feel for what is out there. Our lawyer also mentioned he always recommends someone who is like an advocate but for this stage of the game.

Someone mentioned in one of the posts of making sure the burden doesn't fall on the sibling and I couldn't agree more. The special needs lawyer pointed this out to us.

Also, the school my DS goes to has an awesome transition coordinator. If this is something your child has, that's another resource to use.

It's all so overwhelming. I remember way back when thinking looking at preschools was overwhelming (which it was at the time) but this is a whole other ballgame.

[Anonymous]

The key is qualifying for the long term funding stream in your state. Then to find a provider with the trained support staff to provide the services your son or daughter needs to meet their multiple needs. A Special Needs Trust SNT can provide for extras that your adult may enjoy or specialized equipment that Medicare/Medicaid may not cover. If there is a sibling( s) then finding an organization or equivalent of an adult care coordinator to check in periodically to give one peace if mind when you are not there or able to.

The options not to involve a sibling are much less for the many parents whose disabled adult child will not meet then” level of criticality” to receive the 24/7 waiver option unless they have the financial means to locate a provider with private pay. There are always Emergency
Slots but all would like to avoid this and be able to make a plan - difficult always and always subject to change … - but usually will
involve a sibling( s).

It is unfortunate that a federal law prevents the option on having the ability to look at a CCRC for a parent and an adult disabled DS or DD until the person is age 62. It might be interesting to advocate for such an option or develop an option with a provider.

[Anonymous]

We plan to put our child with ASD into a group home as soon as they qualify.

[Anonymous]

Anonymous wrote:

Anonymous wrote:What is your anticipated funding source? If you are thinking that you will need public funds, then you probably want to be talking to your adult social services for your area. One thing we learned with my niece is that if you get offered a placement and you decline it, you don't stay at the top of the list for the next opening. You drop to the bottom. So it could take a long time for you to find something you're satisfied with if it works that way in your area. And, it gives you time to learn about each program.

One thing to remember about programs is that they are only as good as their leaders. So when management changes, and it does sometimes frequently, the quality can change with it.

Good luck. It was tough to navigate for our family.

We're not rich so there's no way we could pay for a lifetime of residence in a group home. We can probably leave them some money in a trusts for some incidentals or occasional travel.

Re funding something like this. Friends worked with parents of other disabled adult children to create a safe home within walking distance to their Temple. The parents started the program with donations and down payment but the Temple will operate the home for members if its congregation

[Anonymous]

Anonymous wrote:Does she have any siblings? If she has siblings then you need to figure out a place for her sooner rather than later so it doesn’t fall on the sibling to do it in an emergency. But you are in your 50s, not your 70s, so if you are feeling well, I don’t think there is any reason to do it now. I think in your shoes I would be starting to do research about the resources and living situations available and how the transition works, but probably not making any changes yet.

I would start the process now so you can visit, advocate and change to a different place if you don't think it's a fit. You are in a better position to help with the adjustment and it will give you peace of mind once you see it's working out.

[Anonymous]

I’m not sure where you are located, but the Barber National Institute, in PA is amazing. My aunt was there and lived in a group home as well as worked in their coffee shop. It gave my mom peace of mind knowing she was thriving and had a good quality of life. They have programs, including residential, throughout PA.

[Anonymous]

Anonymous wrote:I’m not sure where you are located, but the Barber National Institute, in PA is amazing. My aunt was there and lived in a group home as well as worked in their coffee shop. It gave my mom peace of mind knowing she was thriving and had a good quality of life. They have programs, including residential, throughout PA.

Do we need to be residents of PA to apply for her to live in a facility in PA?

[Anonymous]

Re the previous poster about being PA residents for the Barber Center, I do not believe so as the locations in Erie, PA had members/residents from New York State and Ohio, but this was also a few years ago so I cannot speak to any recent changes.
If any interest, give them a call as I’ve always found their staff to be helpful in finding answers.
Good luck - give yourself grace in the process and recognize what you’re doing is hard, but ultimately a positive decision for all.

[Anonymous]

Anonymous wrote:Re the previous poster about being PA residents for the Barber Center, I do not believe so as the locations in Erie, PA had members/residents from New York State and Ohio, but this was also a few years ago so I cannot speak to any recent changes.
If any interest, give them a call as I’ve always found their staff to be helpful in finding answers.
Good luck - give yourself grace in the process and recognize what you’re doing is hard, but ultimately a positive decision for all.

It depends I would imagine on who will fund the services. If it is private pay, I would think yes. If you are expecting another funding source such as Medicaid waiver it is unlikely.

[Anonymous]

Anonymous wrote:We plan to put our child with ASD into a group home as soon as they qualify.

Do you mind sharing your thought process around this timing?

[Anonymous]

OP - This is a very good thread on what parents are thinking about and hoping to be doing. [b] For any young adult with a disability, the hardest issue is the residential piece in a safe program with appropriate suports - for the long term. It is not so much purchasing of a condo, townhome or single family home with other parents, but finding a provider with a long-term track record of providing the specialized support services and the long-term funding for the support staffing. I want to share some things parents might do while a child is in school.

a- Get an intake evaluation done with the local developmental disabilities agency to establish a file at least with a Case Manager or an active file if it is appropriate near the age of transition and get your DC on the appropriate Medicaid Waiver waiting list. Unless you have the funds to really private pay for a placement long-term, then be sure to get an idea of just how many what I call 24/7 Medicaid Waiver are usually available in your state/region. We are in Virginia and the funding has shifted to Family & Individual Support Waivers to provide a level of support to get folks "technically off" of the waitlist, but most are limited in hours of support that does not inclue the residential. Figure out how far you would be willing to look for a home for a son or daughter.

b- Join advocacy and non-profit organizations in support of your DC's disability needs to that you can seek more funding streams, learn about providers and network with other familiesw with similar needs. Your best information source may be a family who was able to more recently secure a full waiver with a provider they like. If your teen is in a private placement school (by school division) see that their contacts on housing services might be and how/when to apply.

c- For a successful and long-term home placement, research which providers can meet specific needs such as those with complex medical care needs, intense behavioral support needs and/or accessible locations and transportation vehicles if using a wheelchair. Learn about staffing levels and the expectation of housemates - ie what would make one unsuccessful in staying in a home once established. In rereading this piece, I would also say to look at what states may offer and even consider moving to have more of a chance to get adult services. Remember that Medicaid Waivers are not portable from one state to another.

d- Considering residential support staffing costs and medical coverage, it will usually be a combination of Medicaid, Medicare and private pay on giving one the widest array of options. Besides just setting sup a Special Needs Trust, you will want to find a way for the trust to provide for long-term oversight of the provider services to ensure continuing quality. As mentioned an advocate to help you get a placement might be helpful, but also to find the equivalent of an Elder Care Coordinator to ensure care level continues will be key for those who can't speak for themselves.

e- Looking at the school program NOW in terms of how one can work on developing to the best of one's ability personal care skills, control of behavior, consistent communication skills and even help in transfers from two to one folks will widen options for a home placement after public education ends.

f - Understand clearly that the needs of your 20s something are the same as those in families with a one in their 30s, 40s, or even 50s and the baseline for a Medicaid Waiver placement is "the level of criticality" of both the disabled adult and the parent(s) usually. You can say you do not want to involve siblings, but the reality is different, but comparing needs of declinging parents in their late 70/80s is usually a bit different than those in say late 40s/50s.

[Anonymous]

Outside of Pittsburgh - McGuire is a wonderful place.

https://mcguirememorial.org/mcguire-memorial-home/our-programs-services/residential-services/

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:What is your anticipated funding source? If you are thinking that you will need public funds, then you probably want to be talking to your adult social services for your area. One thing we learned with my niece is that if you get offered a placement and you decline it, you don't stay at the top of the list for the next opening. You drop to the bottom. So it could take a long time for you to find something you're satisfied with if it works that way in your area. And, it gives you time to learn about each program.

One thing to remember about programs is that they are only as good as their leaders. So when management changes, and it does sometimes frequently, the quality can change with it.

Good luck. It was tough to navigate for our family.

We're not rich so there's no way we could pay for a lifetime of residence in a group home. We can probably leave them some money in a trusts for some incidentals or occasional travel.

Re funding something like this. Friends worked with parents of other disabled adult children to create a safe home within walking distance to their Temple. The parents started the program with donations and down payment but the Temple will operate the home for members if its congregation

Is this in the DC metro area? If so, may I ask where? Is it a nonprofit separate from the Temple? By safe home, do you mean there is 24 hour care?

[Anonymous]

In DC area one excellent residential program is the Jewish Foundation for Group Homes.