The future and a daughter with special needs

**Buc-O-Mama** · 06-12-2008, 11:24 PM

I'm not sure what forum my question fits in so here goes. Does anyone have any specific thoughts on planning for the future of a special needs child? She is 14 now, and has physical as well as intellectual issues that will most likely prevent her from ever being truly self sufficient. My best friend's husband is an attorney that handles planning of situations like this, but I really want to explore other ideas before we make our decisions.

It seems like every plan includes applying for disability/medicaid once she turns 18, like that is just the normal course of action. I don't want to have her relying on the government unless we have no other choice. As far as her medical care we might not have a choice. It is just an overwhelming thing to think about sometimes. We need to save for our retirement and hers at the same time. I don't often let my mind wander in this direction because it's darned scary for me, but feel like we've already put it off too long. We have savings/investments of different types, but it doesn't seem like it will come close to what she'll need in the future.

She's just so vulnerable and it breaks my heart that someday we won't be here for her. That's why we have to have a better plan now. Thoughts?

**IntlMom** · 06-12-2008, 11:26 PM

No thoughts for you, except to say that we are a few years behind you with our son. He is 10 and we are in the same boat!

**cissylu** · 06-12-2008, 11:59 PM

I don`t have a special need`s child . I wish I could help you.
they`ll be someone on here that will have an answer for you.

**janelane** · 06-13-2008, 12:47 AM

Originally Posted by Buc-O-Mama

It seems like every plan includes applying for disability/medicaid once she turns 18, like that is just the normal course of action. I don't want to have her relying on the government unless we have no other choice...(snip)

She's just so vulnerable and it breaks my heart that someday we won't be here for her. That's why we have to have a better plan now. Thoughts?

I understand you not wanting to rely on the government, but I would encourage you to apply anyway for the very fact that indeed someday you will not be there for her, and someday may unexpectedly come sooner than later. Better to have that lined up incase something unforseen happens to you, then she won't have to deal with it herself or get someone to help her apply if she is in the position as an adult that she would need to. Also think about very solid life insurance policies.

As far as investing on your own, that's over my head, I've no suggestions. I just wanted you to maybe rethink your position on the disability. It's there to help those who need it most, after all

**mfedor** · 06-13-2008, 06:36 AM

Good morning. I do have a special needs child. Although my daughter will be six this july we are in a similar situation. As you are covered by insurance, your daughter will be too. Most insurances cover disabled children as dependents as long as you are their sole support. Secondly, there is a special needs trust that you should consider setting up. This allows you to cover other living expenses with out reducing the benefits that she will receive from the government. You should apply for government benefits when she turns 18. Even if you only use the medicaid as a supplemental insurance. This is a critical planning step and really sets her up for when you and your husband are no longer working. Feel free to pm me. We are working on getting all this stuff put together as well.

**TheRootedNomad** · 06-13-2008, 07:09 AM

Have you researched the places she might be staying if something were to happen to you and your spouse? (Family, group living, ect.) If you don't have committed family members lined up, other places, that are well run for special needs people, are hard to come by. It will take extensive research (read time) to find the good places and put her on a "list" as well as putting your specifications in a will. Hope that's the kind of stuff you were looking for.

**Jskell911** · 06-13-2008, 07:12 AM

I have no ideas for you, just a sympathetic shoulder. My son is an Aspie, and sometimes I worry about stuff like this as well. In the long run, I do believe my son will be self sufficient, so I just cannot fathom the feelings you have and the worries you encounter.

Is there an area support group near you? I know my area hospital runs many geared towards parenting special needs children. If there is, then this may be a great resource for you. Also, check out the Wrights Law website. Great ideas here for schooling and beyond. They have a great newsletter and forums if I recall.

Good luck to you and your family!

http://www.wrightslaw.com/

**Denvergirlie** · 06-13-2008, 08:12 AM

I too recommend getting her enrolled in governemtn programs.
Is she well socialized? Could she live in a group home?

My Aunt is mentally retarded (Probaly not PC anymore these days to call her that, but that's what she's been classiflied thus far for 50 years so my aplogies if I have inadvertently offended anyone). Her parents did an awful job of preparing her for their deaths. They keep her at home and away from others, althou i her 30's she had a job at McDonald's for a short time. However, when her parents went into nursing homes for Alz, she was completely unprepared to live with others. Now 10 years later she has her own life in the group home. She is a low level functioning but she can at least function to a part.

Enroll your daughter in gov't services and make sure she is well socailized. If she needs to live in a group home, then get her started in that sooner than later.

Hugs

**FreesiaE** · 06-13-2008, 08:52 AM

One recommendation I have if she is in PS, is to ask when her ITP begins. Many states it's 14, federal law says at 16. That should be a great assistance and provide many resources for you.

**Buc-O-Mama** · 06-13-2008, 09:54 AM

Thanks for all your great advice! The trust is being set up, and we have a handle on living arrangements although no permanent plans have been made yet. She is well socialized and has been working on her life skills pretty hard. I have a bit more peace about using government medical services when she's an adult. Thanks again for your kind words and advice.

**Dancing Lotus** · 06-13-2008, 11:09 AM

My husband has an aunt who is special needs. She is in her 50's but has the capacity of a 5 or 6 yr old. We tend to think of her as a big kid. Her parents have tried to keep her social and they have a place for her to go when they are no longer here for her. A few yrs ago to help her they decided to start letting her stay at this home on the weekends. I really don't know anything about there finances so I can't help with that.

**fernykins** · 06-13-2008, 11:53 AM

Its ascary thing to have a special needs child.......... My son has custody of his but before he did all the mom would do is sit him in front of the tv........... He now plays baseball, swims, and he is learning a little bit........ He gets the state medical and some ssi. I am trying to teach hime the different bills and coins. I'm worried too about what will happen to him if I am gone r his dad. Check out as much as you can on your childs condition and talk to people who deal with this problem
Fern

**angelbumpkin** · 06-13-2008, 12:05 PM

As a mom of 2 special needs kids I recommend applying for the goverment programs they are there too help even if only secondary. Also talk with yor childs ese specialist and school social worker if they have one. They often have ideas and know of programs some of us parents aren't aware of.

I wish you the best. Hugs

**Frugal Nurse** · 06-13-2008, 12:14 PM

That is totally sucky.

I don't have any advice - legally, medically, socially or otherwise.

But hugz.
I hope you figure out what you need to do.
This is a tough situation.