Anonymous wrote:

Anonymous wrote:This situation is very plausible. My brother has SN and my parents started the process to find him a group home when they were in their 50s. It took about 5 years to find a good one for him, and he loves it.

However, I go with him sometimes to SPRED (Special Religious Ed -- Sunday school for SN basically) at a nearby church and it was astounding to see the number of SN children in their 30s and 40s where the parent was quite old, and basically not interested in finding a placement for their child. I dont' know if it's unwillingness to let go, or don't want to face their own mortality, or don't want to think they're not needed. Who knows, maybe they're just too busy for this. But by all means, these cases are not rare and it's unfortunate. I think my father even tried to gently approach the topic with some parents there while socializing, but I don't think it went well.

I'll tell you why they haven't placed their adult child. They are afraid of them being neglected or abused. I have a nonverbal autistic daughter who is as innocent and trusting as a child. When she was in school, we had a one-on-one with her because one day in kinder, she almost wandered onto a highway because the aides were too busy gabbing to watch and engage the children. She would be easy to take advantage of, despite years of trying to teach her otherwise. She also requires a regimen of daily medication and must be watched for signs of asthma and given nebulizer treatments. She also is prone to self-injury so any increase in such behaviors must be addressed immediately or they will escalate and last for months, resulting in significant injury/infection, more medication, behavioral intervention and constant supervision while awake by a trained adult. What group home is going to do this? Sure, we all know that preparations need to be made but, realistically, our children's health and well-being are going to suffer when we're unable to care for them because we have seen it when they are under the care of others.

I was about to say the same. I have a family member who has mobility issues and failing health. His caregiver, another family member, is terrified of what it will mean for him to be somewhere else and cared for by staff. It's a huge emotional hurdle.

I do not agree that things are necessarily an entitlement, but I do think that it is sad when folks do not understand what service may be available to help them out and this is a particularly warranted case - an elderly woman who has been caring for a disabled son for as long as she could and not relying on the government to just step and do it for her. I hope that you will try and make sure your aunt gets connected to some professionals who can assess the care needs of both her and her son and make contact with the right services which might help them. You never know that with the right mix of possibly home health, companion/respite, day support program for the son, home delivered meals, occasional homemaking assistance that your aunt may not still be able to stay in her home with her son, especially if there was caretaker assistance for him at start and end of day.

Anonymous wrote:Again, I'm sorry you have had bad experiences. Many people in Maryland believe what they are told about waiting lists and the impossibility of getting services. But truly: if your loved one is already on the medicaid waiver, (as they should be if they exited school at 21), Medically necessary services are an entitlement. If you don't believe me (and no I'm not on crack or any other substance), call the toll free number at the Maryland disability law center and ask them yourself.
No, it's not as simple as just calling DDA. But it is true that there are many children Who do receive services through DDA and you have to start somewhere because yes service coordination is a disaster. But if you do nothing, nothing is what you get. Good luck to all of us.

It's not a question of whether or not the services are an entitlement. Of course we agree they are an entitlement. But this is like waving around a copy of the constitution while you are being arrested. Who the hell cares what you are entitled to? It's what you can get that matters.

Again, I'm sorry you have had bad experiences. Many people in Maryland believe what they are told about waiting lists and the impossibility of getting services. But truly: if your loved one is already on the medicaid waiver, (as they should be if they exited school at 21), Medically necessary services are an entitlement. If you don't believe me (and no I'm not on crack or any other substance), call the toll free number at the Maryland disability law center and ask them yourself.
No, it's not as simple as just calling DDA. But it is true that there are many children Who do receive services through DDA and you have to start somewhere because yes service coordination is a disaster. But if you do nothing, nothing is what you get. Good luck to all of us.

Anonymous wrote:I'm sorry previous posters have not had success with the DDA process. I'm not saying it's quick, but people in Maryland need to realize that if their loved one is already on the Medicaid waiver, they are entitled to all medically necessary services. Including residential services, in a reasonably prompt timeframe.
And while DDA doesn't often pay for children's services, they can and do. DDA started providing services to my kid at 15 when there was a crisis.
Don't just assume help is unavailable or inadequate. Go straight to the top: Bernie Simmons, the director. And don't stop till you get it. And don't count on any help from the school folks. They are unfortunately very uninformed about the process.

Yes, it's our failure to realize what we're entitled to that is holding us back. I'm going to pick up the phone and tell Bernie I've realized I'm entitled to services in a reasonably prompt timeframe!

Lady, are you high on crack?

As the Mom of a young adult with a cognitive disability (age 31), I can agree many of the point made. Unless you are in her shoes, no one should criticize the Mom of the disabled fellow. I can tell you that our daughter has nothing compared to an adult who not only has the cognitive limitations to deal with, but also the daily challenges of physical care. I will list some ideas as quickly as possible for OP:

#1 Your aunt is too old to try to face this situation herself. Ask her or find out from someone closet to her if she/her son is connected to any agency in her area which deals with adults with a cognitive disability. She needs to get an INTAKE evaluation done for her son to get a Case Manager.

#2 If her son does have a Case Manager or had one, then Aunt needs to be on Active Case Management status and have a Level of Functioning evaluation of her son done so that he can be placed on what it sounds like he will qualify for the ID Waiver Waiting list - Emergency or Urgent Care list. And someone needs to get approval to talk to the Case Manager to confirm the details of the urgency of this situation.

#3 Most likely in Maryland because even in the dire land of Virginia, Aunt should be able to get her son AND herself services through the Elderly and Disabled Consumer Directed Waiver which will provide for companion services for personal care and health needs and respite care. One can get the EDCD Waiver AND still be on the list for the ID or DD Wiavers.

#4 If Aunt is resisting any idea of contacting the disability services agency in her area, then I would contact the local Department of Social Services for an evaluation of the living situation. DSS will work to keep the family unit together if it is appropriate, but you may well have two individuals in need of direct care and support.

#5 In the best case scenario, Aunt will have a will, special needs trust for her son, power of attorney, health care directive for herself AND a full guardianship of her son so she can make decisions. If she lacks any or all or is beyond the capacity to make decisions for herself/her son, then I would suggest a trustworthy elder care lawyer - if she can afford it. If not then working with local DSS and local disability Case Manager is the way to proceed.

#6 It may help Aunt if son can go out by para-transit to a day activity program or have companion care regularly in the home to give her a break while waiting for other services. Unfortunately, there are many, many similar situations. And I can tell you clearly that we have done everything right for our daughter with all the financial and legal planning that we could do and afford, and she is on the emergency ID waiting list do to our ages (not that old) AND there is no way in this lifetime that she will every get an ID Waiver in Virginia........ Maryland does not seem to be so bad - only 3,200 on the waiting list. There are web sites one can go to in order to get pretty quick stats by states of waiting list for services. We are recently retired so we have one real answer - move.......tell me another.

[b]Anyway, do not criticize the Mom/Aunt because raising and caring for any child with a disability who will need even general overall support for a lifetime becomes more intensive as parents age out and as there are changes in the Disabled Adult Child who will also age out. And again, for one with behavioral or physical challenges, it is double times hard. OP - as a cousin, the best thing you can do is to try to make a connection for your aunt to a Case Manager or if no other recourse then do an Adult Protective Services report. ****Actually in Virginia under the news rules I have seen put forth by families on the waiting list and other stake holders once the waivers are reevaluated, "The applicant will be age 55 or older" is a new criteria. Also the level of emergency must rise to the level of an APS or CPS report so you actually might be helping her get to the top of the local area list.

We all do the best we can with all of our children AND no one knows when a child or spouse may have to deal with a sudden disability so no one should be so quick to judge.

Isn't there a really long waitlist just to get the MEdicaid waiver? Or is that in VA?

I'm sorry previous posters have not had success with the DDA process. I'm not saying it's quick, but people in Maryland need to realize that if their loved one is already on the Medicaid waiver, they are entitled to all medically necessary services. Including residential services, in a reasonably prompt timeframe.
And while DDA doesn't often pay for children's services, they can and do. DDA started providing services to my kid at 15 when there was a crisis.
Don't just assume help is unavailable or inadequate. Go straight to the top: Bernie Simmons, the director. And don't stop till you get it. And don't count on any help from the school folks. They are unfortunately very uninformed about the process.

Anonymous wrote:This situation is very plausible. My brother has SN and my parents started the process to find him a group home when they were in their 50s. It took about 5 years to find a good one for him, and he loves it.

However, I go with him sometimes to SPRED (Special Religious Ed -- Sunday school for SN basically) at a nearby church and it was astounding to see the number of SN children in their 30s and 40s where the parent was quite old, and basically not interested in finding a placement for their child. I dont' know if it's unwillingness to let go, or don't want to face their own mortality, or don't want to think they're not needed. Who knows, maybe they're just too busy for this. But by all means, these cases are not rare and it's unfortunate. I think my father even tried to gently approach the topic with some parents there while socializing, but I don't think it went well.

Right. I'm sure the only reason those parents haven't found a placement for their kids is because they're unwillingness to let go, don't want to face their own mortality or don't want to think they're not needed.

Anonymous wrote:Wow. Not the OP, but OP is trying to help. Is she naive? Yes. But attaching her and being angry won't help.

How was the OP trying to help? Explain. Because it seems to me the OP wanted "someone" (some fantasy person) to come in and set her Aunt straight about her Aunt's "denial" problem.

Anonymous wrote:

Anonymous wrote:This situation is very plausible. My brother has SN and my parents started the process to find him a group home when they were in their 50s. It took about 5 years to find a good one for him, and he loves it.

However, I go with him sometimes to SPRED (Special Religious Ed -- Sunday school for SN basically) at a nearby church and it was astounding to see the number of SN children in their 30s and 40s where the parent was quite old, and basically not interested in finding a placement for their child. I dont' know if it's unwillingness to let go, or don't want to face their own mortality, or don't want to think they're not needed. Who knows, maybe they're just too busy for this. But by all means, these cases are not rare and it's unfortunate. I think my father even tried to gently approach the topic with some parents there while socializing, but I don't think it went well.

I'll tell you why they haven't placed their adult child. They are afraid of them being neglected or abused. I have a nonverbal autistic daughter who is as innocent and trusting as a child. When she was in school, we had a one-on-one with her because one day in kinder, she almost wandered onto a highway because the aides were too busy gabbing to watch and engage the children. She would be easy to take advantage of, despite years of trying to teach her otherwise. She also requires a regimen of daily medication and must be watched for signs of asthma and given nebulizer treatments. She also is prone to self-injury so any increase in such behaviors must be addressed immediately or they will escalate and last for months, resulting in significant injury/infection, more medication, behavioral intervention and constant supervision while awake by a trained adult. What group home is going to do this? Sure, we all know that preparations need to be made but, realistically, our children's health and well-being are going to suffer when we're unable to care for them because we have seen it when they are under the care of others.

Yep.

Imagine the fears you had the first day you sent your very young child -- nonverbal and unable to care for himself, not toilet trained, defenseless -- to daycare or preschool by himself, into the hands of strangers. You cried. You posted on DCUM about how anxious you were and asked to be "talked down." Now imagine that your child will never talk, never walk, never get out of diapers. Furthermore, your "child" quite probably disgusts some people with drooling, bowel movements, screaming, tantrums, and the like. Do you think this anxiety goes away? Or does it get 10,000 times worse? Now that your child is an adult and can get pregnant? Can be sexually abused?

Anonymous wrote:This situation is very plausible. My brother has SN and my parents started the process to find him a group home when they were in their 50s. It took about 5 years to find a good one for him, and he loves it.

However, I go with him sometimes to SPRED (Special Religious Ed -- Sunday school for SN basically) at a nearby church and it was astounding to see the number of SN children in their 30s and 40s where the parent was quite old, and basically not interested in finding a placement for their child. I dont' know if it's unwillingness to let go, or don't want to face their own mortality, or don't want to think they're not needed. Who knows, maybe they're just too busy for this. But by all means, these cases are not rare and it's unfortunate. I think my father even tried to gently approach the topic with some parents there while socializing, but I don't think it went well.

I'll tell you why they haven't placed their adult child. They are afraid of them being neglected or abused. I have a nonverbal autistic daughter who is as innocent and trusting as a child. When she was in school, we had a one-on-one with her because one day in kinder, she almost wandered onto a highway because the aides were too busy gabbing to watch and engage the children. She would be easy to take advantage of, despite years of trying to teach her otherwise. She also requires a regimen of daily medication and must be watched for signs of asthma and given nebulizer treatments. She also is prone to self-injury so any increase in such behaviors must be addressed immediately or they will escalate and last for months, resulting in significant injury/infection, more medication, behavioral intervention and constant supervision while awake by a trained adult. What group home is going to do this? Sure, we all know that preparations need to be made but, realistically, our children's health and well-being are going to suffer when we're unable to care for them because we have seen it when they are under the care of others.

This situation is very plausible. My brother has SN and my parents started the process to find him a group home when they were in their 50s. It took about 5 years to find a good one for him, and he loves it.

However, I go with him sometimes to SPRED (Special Religious Ed -- Sunday school for SN basically) at a nearby church and it was astounding to see the number of SN children in their 30s and 40s where the parent was quite old, and basically not interested in finding a placement for their child. I dont' know if it's unwillingness to let go, or don't want to face their own mortality, or don't want to think they're not needed. Who knows, maybe they're just too busy for this. But by all means, these cases are not rare and it's unfortunate. I think my father even tried to gently approach the topic with some parents there while socializing, but I don't think it went well.

Wow. Not the OP, but OP is trying to help. Is she naive? Yes. But attaching her and being angry won't help.

I see we never heard back from OP about her Aunt's denial.