Raising kids with special needs: The girl next door

Summer's almost here, and I know it because A. is singing in her backyard. She lives next door to us and every year, she starts her solos around Memorial Day, usually in the early evening. I watch her from our back door. She stands beneath a giant oak tree, always alone. I'm never quite sure what she's singing, but her voice is clear and mesmerizing. She holds a microphone in her hand and raises it high at times, as if she is dedicating songs to God.

A. has Down syndrome. She is in her early twenties, and gives me the biggest wave hello whenever she sees me. She is the last of 16 children. After Max was born, I hoped that we might glean words of wisdom about raising him from her dad, Mr. R. Over the years, though, he's mostly just told us how impressed he is with Max's progress. "Hey there, Max, looking good!" he'd say from his front porch as Max wobbled by on his walker and then, later, on his adapted tricycle and these days, on the green tractor he drives like a demon.

I don't see A. that much. Every morning, our state's transportation service for the differently-abled arrives to take her to work shortly before Max gets on his yellow bus. I am not sure where A. works now. She used to help out at a frame store, but I think she switched jobs. I can always count on seeing her Halloween night, because she is a diehard trick-or-treater who seems to rack up the most candy in our neighborhood. Mr. R. is famous for giving out full-size candy bars.

Before I had Max, I felt sorry for A.

Now that I have Max, I don't feel sorry for her at all.

I notice how good her speech is and all the activities she loves to do, including playing croquet and growing a vegetable garden. I see how happy she seems, and how loved she is.

Our families are the only ones in the neighborhood with kids who have major special needs. I find it comforting to have A. next door. It makes me feel less alone.

I look at A. and wonder if I am seeing the life the future holds for Max. I'd like to know what Mr. R. and his wife have planned for her after they're gone; they are in their late seventies, maybe even early eighties. With all those siblings, surely one will be there for her.

Tonight, though, A. is singing in her backyard, I am watching her, and she is perfectly content.

It is good to have her there.

Can you understand why?

Wills for parents of kids with special needs

Kiera asked to write this guest post because she and her husband were getting their will done and thought it was something a lot of parents of kids with special needs struggle with. Kiera is one of the first mom bloggers I met; she's mom to Reichen (aka Little Dude), a handsome, happy and "sometimes-troublemaking-toddler" who happened to have a stroke before birth. He's getting his tonsils out today, so everyone send him get-well-soon vibes. Kiera blogs over at Ike Happens! I found what she wrote helpful and touching; I'm sure you will, too.

When my son was born we had initially decided it was the time to get things in writing. Then our son was diagnosed with an in-utero stroke. Our focus switched from “What would he do if something happened to us?” to “What do we need to do now that we know something happened to him?”

I am so proud to say that this month, after three years of procrastination, my husband and I finally sat down and met with a lawyer about getting a will in place. This was a LONG time coming and something that we really struggled with, especially knowing that our child had special needs. I am hoping that by writing up what we did, it might help others who are in the same position to see that it was not nearly as difficult as we thought it would be

Here is the process we followed:

• Custody: Who "gets" our Little Dude. This was by far and away the trickiest decision when planning our will, and most of the reason why it took us close to three years to get it done. I love my family and my husband’s family, but when it comes down to it, none of them are us. It is hard to imagine your child in another person’s life and you not being in their life. We had to move past that and decide what was non-negotiable for us for the people raising Little Dude.

Some of the factors we used to decide it were:
- Will he be located close to both families?
- Will he be in an area that has good schools with known special needs programs, to help with any individual education plan needs he has?
- Will the custodians be willing to take on the sheer volume of therapies, doctors appointments, specialists and annual check-ups that are required for any child who has had a stroke?
- Will they take him into the family and give him all of the love, hugs, kisses and cuddles that he deserves?

• Financial: Who gets to control Little Dude’s money? For us this was an opportunity to make sure that both families are still involved in Little Dude’s life. We specifically picked someone from the other side of the family to handle the financial side to ensure that there was a tie between the two sides.

We used a similar set of factors to decide who this would be:
- Who would work well with the custodial parents?
- Who do we know will always be on the lookout for the best interest of the Little Dude?
- Who will be willing to say “no” to the Little Dude if they felt it was not in his best interest? (Trust me, this person has a spine of steel and will be great at this if needed!)

• Confirming our picks: After we made out decisions on custodial and financial, we met with each of the people and asked them if they would be willing to take the responsibility. We explained why they had been picked, and asked them what they would need from us to make sure that they would be prepared to take on the duties if needed.

• Deciding on a Special Needs trust: We spent quite a bit of time talking about this. Ellen already addressed some of these points in an earlier post on estate planning, which helped to prepare me with questions to ask the lawyer. We ended up deciding not to use one, but that was based completely on our situation and it will differ from family to family.

• Finding the lawyer: Once we had a general idea of what we wanted to do with custody and financial considerations, we started asking friends of ours who they used to set up their wills. I called and interviewed the one that was most highly recommended. I asked her about her experience with special needs kids & with family wills. I found her easy to work with and very knowledgeable. She sent me a packet of information to fill out to ensure that we had all of the information we needed at our first meeting with her.

• Dealing with the emotions of making the will: Halfway through the first meeting with the lawyer, my husband stopped, looked me in the eye and told me that he never realized he was married to Stephen King. Yes, it is a very morbid experience to talk through the will. You need to go through scenarios that you have never thought about. For example “So, if I die, then he dies 36 hours later, whose will would take precedent? How is that different than if we die 12 hours apart?” (Yes, in our state there may be a different reading of the will depending on the time between deaths). The paperwork sent out ahead of time was hugely helpful to us in that meeting

• The cooling off period: After meeting with the lawyer the first time, she let us know that it would be a couple of weeks before she delivered the will. She purposely does that because the initial discussion always sparks things that families would like to have added. In our case, that did prove true. In between the initial meeting and the draft being delivered, my Nana passed away. In watching the activities that my family was going through, it reminded me of things that needed to be added and clarified. We ended up sending a couple of different modification

• After the will: As I write this, we are still in the process of getting the final draft of the will. We have already asked for multiple copies so that we can provide one to our financial advisor to put in his safe, one for each of the guardians and one for our files.

There was one additional activity that we did that was not included in the will in writing. We spoke to one of our favorite therapists and asked if we could give her name as the primary contact to the guardians in case something happened to us. She is a wonderful person and we know that if something should happen, she would be a great resource to introduce the guardians to Little Dude’s care team and get them up-to-date on the most recent treatments.

With all of this, I now have resorted back to hoping that we never need any of this since we will be around to watch the Little Dude grow into a Big Man.

Estate planning for children with special needs: some helpful answers

A month or so ago, I asked for your questions about estate planning for kids with special needs. They've been graciously answered by Diedre Wachbrit Braverman, an attorney and one of the cofounders of the Academy of Special Needs Planners. Eternal thanks to Christina Beavers, the woman who works with ASNP who made this happen.

Obviously, these questions are just a broad overview of planning for children with special needs; you would need to contact an attorney for further help. I know the whole thing is a little overwhelming but remember, this is not something you have to do tomorrow, next week or next month. With young kids, you have time.

"What’s the very first step you need to take to begin planning for a kid with special needs? I don’t know where to start!"
The very first place to start is selecting a special needs planning attorney that you trust to be your guide. That attorney will help you establish a special needs trust (SNT) for your child and can help you in other areas, like finding the right life insurance provider if that's something you're interested in. A special needs trust attorney should be called if your child may not be self-supporting as an adult. A special needs trust is a trust with a trustee that generally inherits money from the parents when the parents die. The trust will ensure that your child receives the inheritance that you wish for him/her to receive, without having a negative impact on the public benefits the child would otherwise lose.

"Do you usually do a special needs trust through financial planners or do you do it through lawyers?"
Custom special needs trusts are set up by attorneys. I always recommend people work with attorneys who focus on special needs planning.

"How do we find reputable people to help us navigate this scary planning process?"
I recommend visiting the Academy of Special Needs Planners’ website, where you can access a database of highly qualified attorneys who specialize in special needs planning. All of the member attorneys have a strong interest in special needs planning and a keen understanding of the challenges you and your family face. As you’ll see, ASNP members are located in many places across the country, so you can easily identify a planner in your local area.

"What are typical costs associated with setting up the trusts?"
Fees for special needs trust vary greatly across geographies, but you can expect that your special needs trust will probably cost more than the average in your town for a revocable living trust, because it is such a specialized and highly customized document. If someone offers you a trust for less than $2,000, be very cautious. Sometimes cheap, all-boilerplate special needs trusts are used as "loss leaders" to lure unsuspecting parents into high pressure life insurance sales pitches for high-commission, low-quality products.

"If you’re a family on a limited budget, how can you set up a special needs trust if you can’t afford to hire an attorney?"
One way is to join an existing special needs trust called a “pooled trust,” though it can still cost a couple thousand dollars. Many attorneys accept credit cards. And some may be willing to set up payment plans for you.

"Is setting up a special needs trust like a setting up a foundation, with a board or trustees?"
When you set up a special needs trust, you will select a trustee to administer the trust. The trustee should be someone that you trust to be responsible, ethical and knowledgeable enough to act in your child’s best interest. If you don’t have a family member or close friend who fits the bill, you may consider a corporate trustee (like a bank).

"I am confused about the money and how it can be spent. Can it be spent on old medical bills? Can the money be spent on related medical things, like an adaptive car, for instance?"
It really depends on what state you live in. Some states have very strict guidelines for what money can be spent on, while in others, the trustee can spend the money on whatever he/she decides is best for the beneficiary, like an adaptive car. Be sure to ask your attorney what the laws are in your state, and when you're planning consider if and where your child may move after you’re gone.

"Do you need special permission to spend money?"
The Trustee, who can be you if your trust is very carefully drafted, does not need anyone's permission. But if the trustee spends money in a way that violates the state's SSI or Medicaid rules, the beneficiary could be penalized with a loss of benefits.

"What is necessary to tell our relatives to keep in mind when leaving our children money in their will?"
It's a great idea to tell anyone who might have named your child in their own plan about the special needs trust. That's also a good reason why your special needs trust should be a separate document with a name of its own: So that they can name the trust in their own plans and leave money to the special needs trust.

"What are the financial advantages/disadvantages to setting up a special needs trust? For example, if we put money into it now, would we be able to take it out later if we needed it?"
The only advantage to putting money into a SNT while you are alive is if you want that money out of your estate for tax purposes. If your trust is revocable and you put money in it, you can take it out, but there is no advantage to putting the money in. If your trust is irrevocable, there is an estate tax advantage to putting money in but you cannot take it out later for yourself.

"Is a special needs trust included as part of our assets? If so, would it affect our family receiving financial assistance?"
A properly drafted special needs trust is not part of your assets or your child's assets, for purposes of receiving financial assistance.


Photo by Stefano Agosti