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View Full Version : A question for parents of a disabled child/young adult~ Not trip related


daughtersrus
05-02-2012, 01:25 PM
I wasn't sure if I should post this here or not so I posted it on the Community Board first.

My DD will be 18yo in July and with that, there come a lot of changes that we need to make. We know that we need to file for guardianship but can't do that with the court until after her birthday. That alone is enough with trying to get someone to "serve" her with notice, doctor appointment to fill out paperwork saying that she can't care for herself, "serving" our adult DD's in case they want to fight us for guardianship (they're not but the court says we have to do it)...

I'm also trying to find out about other programs for her but it's impossible to get to speak to anyone. Everything is automated. I need to find out if and when we can apply for SSI on her behalf and if there are any other programs that she will qualify for. She has never been on SSI because of parent income/assets but recently was chosen for a waiver in our state and gets some respite care and Medicaid (All Kids in IL). She will continue to be covered under DH's insurance with his union and Medicaid will still be the second payer.

Has anyone gone this road and is willing to help?

Thanks!

Sadie22
05-02-2012, 06:31 PM
I don't have a special needs child - my experience is on the legal side. If you are not already consulting with a lawyer who specializes in guardianships and special needs trusts, this is the time to do so.

daughtersrus
05-03-2012, 09:08 AM
I don't have a special needs child - my experience is on the legal side. If you are not already consulting with a lawyer who specializes in guardianships and special needs trusts, this is the time to do so.

We already have a special needs trust set up but we're trying to do the guardianship without a lawyer because of the cost. The least expensive that I've found for just guardianship is still several thousands of dollars.

Michigan
05-03-2012, 09:31 AM
I don't know your child's needs but for my oldest I didn't do guardianship but I have power of attorney for her medical and financial. Also Social Security will determine if a payee is needed and if you child is able they will be the one that appoints one. I would go online and start the paperwork now.

daughtersrus
05-03-2012, 10:23 AM
I don't know your child's needs but for my oldest I didn't do guardianship but I have power of attorney for her medical and financial. Also Social Security will determine if a payee is needed and if you child is able they will be the one that appoints one. I would go online and start the paperwork now.

My DD is non-verbal, non-ambulatory and completely dependent on an adult for all of her needs(from positioning, feeding, diapering...) so I think that guardianship is really needed.

blondietink
05-13-2012, 09:21 AM
Guardianship in the county I live in in NYS is really cheap and easy. Fill out the forms yourself, have 2 doctors verify the disability, $20.00 for the search through the CPS database, go to court and it's done. Other counties here are not so easy and you have to have a lawyer.

As far as Social Security, just call the 1-800 number, explain the situation and they will send you the forms to fill out or tell you do do it online. They will determine whether you child needs a rep payee for her benefits after they get the reports from you child's doctor and school. Your daughter will have to sign release of information forms. As long as she can make a mark on the release, it will suffice. You can sign as a "witness" to the mark.

weswife
05-13-2012, 10:17 AM
Hi, I am doing this too. My DD is 19 and its the magic number in Canada. We did 3 things housing, heath and finances. Its a big decision and can cost alot of $$$ to get everything in place. :)

gilesmt
05-13-2012, 11:05 AM
*** a DD case worker for 15 years we had only one parent fight for guardianship, almost all caught for power of attorney over money and medical. I have been out of the field for many years so I don't want to make any statements that may not be true for today,but back then it was for protecting of both sides especially as your child gets older and you retire. I would speak to case workers where she is getting her waiver, they should be able to direct you to agencies that can answer your questions.

As for SSI, your daughter most likely will qualify for SSDI, SSI is like the welfare side of federal money, SSDI is for workers who become disabled, Also for there disabled children. So if you and/or your husband have worked for enough quarters then you disabled child will qualify for 1/2 of what you would be qualified for. Another word is under SSI your child may qualify for $600 month. Under SSDI if you qualify for $1450 your daughter would qualify for $725, she would get the higher amount so the $725. She would also after two years qualify for Medicare rather than Medicaid, usually meaning better coverage.

For myself, I have medical decisions over her with a power of attorney, and for both my girls I am on there bank accounts, so I have a little bit of ability for there financial, but allow them to make as many decisions as the can. Also, SSA will send the check to you as your daughters payee, and you don't need anything for that.

This is what works for us, but each case is different, and I think what the big hang up is, is what the states are allowed to take when the child is older and needs something such as a nursing home, if not done right I think the state can take parents and child's money, so this is why, power of attorney and trust have to be set up by a good lawyer and also so many choose not to go the legal guardianship way, also I think a lot has to also do with if a guardianship is set up and prove the child can not act at all for themselves and you and your husband die, than someone in your family has to take it on just as a child, if not the state already has that the parents think this child can not do anything for themselves so they will but the child in an institution or something, although I will say in this state there are no real state institutions anymore but that use to be the fear, and who knows what happens in 10, 20 or 30 years.

Good luck, in this state, the DD worker will go from a child worker, to an adult worker, after the child's 17 birthday. We did it on the child's birthday, but in many cases when parents wanted both caseworkers work together for 3 to 12 months. The adult worker would go to the IEP's to learn about what's going on in school, and we would start to provide other agencies like vocational rehab and I would go to those meetings, so again, go to the state agency that helped you with the waiver.

blondietink
05-13-2012, 06:19 PM
SSDI will only work for this family if one or both of the parents are themselves disabled or retired and drawing Social Security Retirement or disability benefits under their own claim number. SSI is for those whose parents are not retired.

My oldest son was on SSI for 1 year at the age of 18 until his father reached age 62 and began drawing retirement benefits from Social Security. Then my son's benefits changed to the SSDI program. There are different reporting requirments for each program, but his really only comes in to play when the child/adult drawing benefits earns wages from work.

If your child gets services under the Medicaid waiver, then your child should have a service coordinator/case manager of sorts. This person should be able to answer your questions and help you through the maze of paperwork, rules and regulations.

Merilyn
05-13-2012, 07:00 PM
I have a brother who is 59 and mentally disabled and cerebral palsy. He just recently went on SSi because my parents had saved for him to be cared for. When his money ran out, my sister and I applied for SSI for him. We also recently got the waiver you are talking about. TN has it also and what a blessing. My parents didn't work under social security so my brother can't drawn on that from them. He gets a small annuity from Dad that will be forever as a child portion. Each time he gets a raise the SSI goes down. His total income can't be over the amount SSI says he can get.
As for how the set up the paper work, I am his conservator, court appointed. That is the way I am able to handle everything for him. Since you are parents, it should be easier for you. I surely didn't want to become his legal guardian or any title that would require me to pay his bills. He does get TN's form of medicaid which is called TNCare and I will always keep his insurance my parents were able to keep him on. I hope all works out for you. I know every state has their own rules and plans. I am just thankful that TN has the waiver and SSI. I really need the respite care that the waiver offers. I don't think anyone really understand the stress and pressure a caregiver has unless they have been there themselves. To me it is so much worse when it is a child or sibling you own age. You have to worry about who will take care of them when you are gone. God bless you and all your family. AND Happy Mothers Day. You certainly deserve it!!!