New discussion thread for what the title says. Looking for experience and/or advice for what parents with kids that have disabilities should be preparing for. How should we be looking at living trusts, leveraging relatives/siblings, legal preparations, and a whole host of items I’m sure I haven’t considered yet.
Sunny Daze post in a different thread heresparked this one.
I have a daughter on the autism spectrum that will turn 13 on Christmas Eve. Original thread here. I need to get more proactive about setting things up in case I’m not here, my job situation changes, or support for Americans with disabilities changes, etc. I have not set up a living trust or anything specifically to help my daughter, and I need to rectify that.
Open to all and focused on how to safeguard kids with disabilities when adults or no longer have parents to look after them.
Different country so I don’t know how much will be transferable, but I know a man with Down’s syndrome who has a multiple custody setup. His mother was set up as his primary custodian after he was declared incapable for specific purposes (the father was already deceased at the time); the same document established which siblings and in which order would take custody over in case the mother was deceased or incapacitated.
The same document was used as the basis to set up custody of the mother when she did become incapacitated. As it had been updated every few years on account of the other sibling’s life circumstances changing, the latest version reflected well the family’s situation at the time.
This isn’t my area of expertise, but I’ve seen a few things, and been tangentially involved in some so take this with a huge heaping portion of salt.
A lot of it depends on the needs of the kid with disability. Some people go the route of Special Needs Trusts to make sure that the kid can get government benefits, and the Trust provides certain things that are permissible under the government rules. Some people can fund a Trusts that take care of the kid for life. I think it depends on where the child falls and how likely they are to be self sufficient.
I’ve seen in some cases where the parent has to get guardianship over the child when they turn 18 and they need to make decisions for the child. Finding a lawyer who does special needs trusts is important in this process because they can guide you as to what the options are.
A friend of the family (their children were my age, their children’s children are about 10 years older than mine) had a severely disabled grandchild. The belief is that shaken baby syndrome left the child completely unable to care for himself. Their daughter, my friend, wanted very badly to keep her son with her throughout her life. The family rallied to try and support her. She worked the hours when he was in special ed. Her parents worked long past retirement, and they invested in real estate. The idea was that each child (and therefore the grandchildren) would get an income stream through rental properties. These were set up as trusts, to protect everyone involved, and spell out how the income would be managed when people died.
Everything changed when the disabled child hit puberty. He still had trouble walking and talking. He was incontinent. He was also violent. He attacked his mother. Long story short, they tried to make it work for years, but could not. The child became a ward of the state. He lived in a home with similarly disabled adults and will be cared for his entire life.
I hit post too early. My son is on the autism spectrum. We have been wrestling with the school system for years now and finally feel like he might be getting something close to appropriate services. He is at this fork in the road where he can eventually go be a night clerk, or he can go to college, learn to code, and become a programmer. I can see glimmers of hope for college/programmer. Fingers crossed. He programs in his spare time, and he likes it. :eek:
Where he will always, always have trouble is social skills and long term planning. There are things he just doesn’t understand. Things he thinks are stupid even. For example, his social ed teacher decided she’d have a variety of “scared straight” where she’d have a juvenile detention officer come to their classroom and give them a presentation on why they don’t want to go to juv-y, and how easy it is to get there. 'Beamer pronounced the whole thing stupid when the officer told him he wasn’t allowed to push another student back if that student pushed him. “Stupid” The officer then the class that they would have to use a room that had the toilet out where everyone could see it. 'Beamer said “Well, I’m not doing that.”
He may always need help managing finances. We’ll have to see how the next few years go. If that’s not a skill he can pick up, we’ll look into a management trust to bolster his weaknesses, and get that set up. In the short term, we’ll work with his therapy team and identify programs to help him learn specific life skills on his own. He may need our help to get a retirement plan set up.
I am very worried about my literal, no filter, wonderful kid being out there without me. All I can do is try and see the problem spots and plan ahead.
Family attorneys can help with all of this. Oddly I have more contacts in CA than I do in the Northwest, but I’m working on that.
My answers have been long. The short version would be that just like disabilities are individual, how you plan for them will be individual. Planning ahead is a good thing. I’m happy to share information about my experiences. Having an attorney with experience in the area of disability is a very good thing.
Background: I have a 28 year old daughter with a dual diagnosis of autism and MR. She is essentially nonverbal - she has a very limited vocabulary and can only be understood by those who are very, very familiar with her. She is incapable of living independently.
[ul]
[li]Find and retain a special needs lawyer. Preferably one who has experience dealing with both school districts and relevant government agencies. I cannot emphasize this enough. Not a lawyer who has dabbled in these areas, one who specializes in them. They are out there. Check with your local Autism Society chapter. Don’t ask the school - this person will be representing your child against the school.[/li]
[li]You need to set up a special needs trust. this is a trust fund which can provide for certain expenses for your child other than those provided through government services. Clothes, entertainment, vacations, activities. The trust needs to be properly worded so that funds in the trust do not disqualify your child from SSI, Medicaid, and programs which provide living support. A good special needs lawyer can set this up.[/li]
[li]Make sure that anyone who might bequeath any money to your child instead leaves it to the special needs trust. Large sums (more than a few hundred dollars) of money put in the child’s name can wreak havoc with planning - for example, losing services then having to re-apply when the money is burned off.[/li]
[li]Get guardianship of your child when they become an adult. Guardianship simply means that you are making decisions for your child, it does not obligate you to provide financial support for your child. A power of attorney signed by your child will not work. A valid power of attorney can only be signed when the individual is mentally competent.[/li]
[li]It is imperative to get your child into a long-term living arrangement as soon as possible. Many parents in the past have kept their child with them until the parent dies or is too feeble to care for either of them. Then you have a middle-aged (or older) disabled adult suddenly thrust into an new living arrangement. This is not fair to the individual or their subsequent caregivers. The transition is far easier when they are younger and when you are around to ease the process.[/li]
[li]We were very lucky and were able to get our daughter into a group home situation right as she turned 21 (slightly before, actually). This home is with an organization that was founded by a group of parents decades ago to ensure that there was a place for their children to live.[/li]
[li]Never, never, never understate your child’s needs and behaviors or overstate your child’s abilities. Be very clear with all involved how much stress caring for a disabled child is putting on you and your family. “It’s not so bad” will keep you at the back of the line for services.[/li][/ul]
Hope this helps. there’s a ton of stuff I’m forgetting, these are just the ideas which come to mind.
P.S. - My daughter is in Pennsylvania, so Pennsylvania laws apply.
My stepfather’s grandchild (step-grandchild by his first wife) is autistic. His father (while he was alive) refused to acknowledge there was a problem, even though it’s very evident. His mother has kept him at home. He’s now about 25. He works part-time at a movie theater taking tickets. He can’t work concessions or ticket sales because he just doesn’t grok money. Can’t make change, doesn’t understand why money is used, really.
My step-father worries that at some point his mother will no longer be there, or no longer be able to care for him. He has two sisters, but one is not likely to ever act as care-giver, and the other one may not want to spend he life caring for a difficult man. My SF has made provisions in his will for a trust for the guy. But it probably would’ve been better for all concerned if he’d been given the therapy that might’ve helped him while he was younger, and a group-home situation now, before he is forced into that transition.
Thanks for the replies. (Apologies for not coming back earlier but I was in China the past 10 days on a biz trip). Yes, I need to make the time and find a special needs lawyer and get this set up.
Fingers crossed Serena will continue to improve and fit into a group home or other more independent living. She is going to school with both of her sisters full time this year, and is mainstreaming (with 1:1 support and accomodations) in 5 out of 7 classes. Serena’s twin sister, completely unprompted, has expressed a strong desire to live together and care for her twin when they grow up. I am not counting on that. And I’m not sure if that’s in the best interest of my twin. But that’s a whole different kettle of fish.
I’m sure one of the fallouts from the new tax bill will be less services in the future.
Suny Daze, I worked at Microsoft for 14 years including 6 at HQ. Large high tech companies
a) have an awful lot of tolerance for folks that are skilled but on the “geeky” side of things including no social skills. Some become VP’s and of course Bill Gates is widely considered to be an Aspie. (Having interacted with billg a few times, I would be incredibly surprised if he’s neurotypical.)
b) have programs for special needs people that can meet work requirements (such as know how to code, testers, etc)
c) have programs for special needs people that need some or major accomodations
d) have autism support groups (the MSFT one was quite large. Ended up kinda splitting between MSFT employees with children on the spectrum, and as well as MSFT employees ***on ***the spectrum.
Suggest you work through autism related networks to connect with sympathetic employees and HR. There are opportunities if you can dig them out.
My daughter will be 13 the day after Christmas and I have those same worries. She is so dependent on me, and I am her only support. She struggles to make even acquaintances, much less friends, and my family isn’t close at all. I just a month ago joined up with a parents support group for kids with special needs. Thankfully there’s a few experienced moms of older teens who have been pointing us in the right direction. Nobody tells us anything. We just have to figure it out as we go along. I have screwed up so many times already (mostly school services we’ve lost now that she’s been screwed out of ALL support, no IEP, no nothing) just because I didn’t know and didn’t have a way to know.
Rushgeekgirl, our kidlets are 2 days apart and my twins turn 13 Christmas Eve.
Seems odd that you can’t start support services now? That said, I know the wait list is years in most places. We waited about 4 and now qualify for about $2k in Washington State services, although we have had school support since kindergarten.
From what I’ve heard of American friends, some locations also have services which last beyond age X but only if you got in them before that age. I think the original idea was to avoid leaving covered children high and dry while the next-age stage kicks in.
My charity COMMUNITY FOR PERMANENT SUPPORTED HOUSING in Texas works with individuals with disabilities and their families to help the transition to adulthood and independent living with supports if needed.
We have lots of information for parents.
As a parent of a child with disabilities, I created this organization to assist other parents.
Seek out information on Independent Living Centers.
Find out if they offer a shuttle service for local shopping. Do they have attendants on staff for basic patient care? Can residents cook for themselves? Are prepared meals offered if they can’t safely cook?
Organized social activities? Ideally they should have a Social Activities director to organize day trips, games, and craft activities.
In house Security?
Under the right conditions, adults with special needs cab live independent and fulfilling lives.
I don’t know how it works in most states, but in Ohio you can hook up with a Service and Support Administrator, or SSA, through your county Board of Developmental Disabilities. This is of no cost to the family and can be a valuable asset when planning for life events.