Preparing for Death of Parent

[Anonymous]

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.

[Anonymous]

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]

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]

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.