Anonymous
Post 09/16/2025 19:49     Subject: Re:Preparing for Death of Parent

There will probably be survivor benefits for the kids through social security, you should be able to look up what that amount will be.
Anonymous
Post 09/16/2025 19:27     Subject: Preparing for Death of Parent

You will need to have a discussion soon with those you have designated as your children's guardians. Sometimes they have changed their minds so you will have to make different plans.
Anonymous
Post 09/16/2025 18:42     Subject: Preparing for Death of Parent


OP -
I am very sorry for the road ahead for you and your spouse. Here are some ideas that may be helpful.

Reach out to local organizations and family grouos related to your spouses illness. They will be an important source to help you both understand the path ahead and where to go for services and even what things to consider at various stages. Learn together and plan ahead as you can.

Families who are dealing with the same or similar condition may well be your best resource on finding a lawyer and financial advisor on topics already mentioned and some below. They may help ti find in-home care for the adult and children as needs arise.
If accessibility in the home wil be an issue, they may know of reasonable contractors etc,

For your young children, reach out to places like The Arc, local Autism grouos and the Jewish Services Center (not sure of the exact name)serving those with special needs to see what they might provide.

Look up Special Needs Alliance as it offers FREE information on a number of future planing topics.

In your case with perhaps a long period of illness for one spouse and medical bills, you need to speak with a lawyer who is experienced in Medicaid to see if there is a way to protect assets and establish eligibility for
Medicaid if needed fo the ill spouse.

For the working spouse as mentioned see if either child might qualify for a Medicaid Waiver. Also get a clear understanding of the benefits your children woukd qualify upon the death of a parent through Social Security.

Seeing a lawyer to be sure you have basic documents set up on both if you is key. Also, this will need to include guardianship of the children. If you set up a Special Needs Trust for your children (not sure if you can do one for both or two separate) BE SURE that all relatives who might leave funds have the exact wording of the trust.

Also that all financial and legal papers are set up to avoid probare and have ownership set up in the most
efficient manner to avoid taxes and qualify for benefits
As needed.

The parent who has the job needs to make this a priority to keep the job for health insurance and income afterwards. Learn how you might use the FMLA provision if your employer must provide it.

Try And build a circle of support for your young family through your church community, school community And friends. Both spouses need to reach out to your families in honest conversations about your needs and
how others might help.



Anonymous
Post 09/16/2025 09:37     Subject: Preparing for Death of Parent

You need to figure out what services are available for the surviving spouse to work full time. You need to figure out if you qualify for a Medicaid waiver now (called Katie Beckett waivers in some states). Even if Medicaid has a long wait list, get on the list. And push for what other services are available. My kid has been on the Medicaid waitlist for 14 years now. But in the meantime, we get a direct support professional in our home for 22 hours a week to cover after school so we can work. There is usually something to help keep you in the work force.

Also, accept that a high support kid isn’t going to get “perfect” services but you still have to work. You cannot afford to be precious about making sure they have the perfect amount of ABA, ST, OT, etc. The truth is this stuff doesn’t typically make a huge difference for high support needs kids no matter what all the doctors and therapists tell you. If they need care for life, you likely need to care more about savings than the very incremental changes that might come from intense therapies.

Find every type of respite care you can. For example, churches often run some level of respite through programs like Buddy Breaks. Again, you don’t have time to worry about the touch of religion your kid might hear if that isn’t your thing — take the break. I. Our case, our kid goes once a month for three hours on a Saturday. Find out if your kid can attend weeklong overnight camps through your state autism society — and send them.

Call your local autism society and talk to a parent navigator (or whatever help they have). If your child has intellectual disability as well, talk to your local ARC about resources.

All services are state based so don’t plan to move to another state for family support unless you carefully weigh the pros and cons d cons of starting over on waitlists, etc. And don’t overestimate how much family can help. They might all say “sure, we will help” when a kid is 4 and then feel entirely different if you have major behavioral issues with a 10 year old or they have to bathe a 16 year old girl.

If you are hopefully holding out on getting an ID diagnosis, let this go. Getting this diagnosis may help you get more services. Of course, I understand your kid could be high IQ and have high needs.
Anonymous
Post 09/16/2025 09:16     Subject: Preparing for Death of Parent

Make sure there is a will and that surviving spouse is a beneficiary on all accounts.
Check if ill spouse can possibly buy any additional benefits through work (extra life insurance, disability benefits, etc).
Save money. As much as you can right now.
Anonymous
Post 09/16/2025 09:08     Subject: Preparing for Death of Parent

You need a session with a special needs finance professional. That person can help you maximize whatever benefits are available to you. For example, you might be able to get paid for time you spend caregiving.

As for living independently as an adult, you don't need to think about that right now. When your child is 12 you can start planning that. There's Medicaid, SSI, and other things that ou can plan in advance to make your child eligible for.
Anonymous
Post 09/16/2025 08:55     Subject: Preparing for Death of Parent

We have young kids and a parent with a serious health condition. They're ok for now, but the short-to-moderate-term prognosis isn't great.

What can be done to prepare? The kids don't know, and aren't really capable of understanding anyway. We don't plan to tell them until/unless we get to point of extended hospitalization.

Both kids have special needs, although one has ASD with very high support needs. Very likely he will not be able to live independently later in life.

What kind of things can be done ahead of time to put the surviving spouse in a better position? At this point, life insurance is what it is- about $1M. (And, as a future problem, the surviving spouse isn't able to get life insurance at all due to their own health issues.) There are vague plans to move closer to (or potentially in with) other family, although we're reliant on current employer health insurance, so that can't really happen in advance. It really isn't clear how finances and logistical support will work given that there isn't a practical way to work full time with a child with special needs due to lack of child care options outside of school.

There may not be much that can be done, but advice/suggestions would be appreciated.