Redoing our will – Setting up a Special Needs Trust

We learned a lot from that recent Texas Parent 2 Parent conference.  One of the most important things we took away from this conference was the needs to redo our will.   For us, a will is not only designed to choose who will parent our children in case we should pass away before they do, but it is designed to protect them financially as best we can.  Although I do admit, thinking about who would be the best parents for my kids if we couldn’t be their parents is so tough!

Nolo.com has some great information on what exactly a “special needs trust” is.  

Use a trust to leave money to a disabled loved one — without jeopardizing government benefits.

If you want to leave money or property upon your death to someone with a disability, you must plan carefully. Otherwise, you could jeopardize your loved one’s ability to receive Supplemental Security Income (SSI) and Medicaid benefits. By setting up a “special needs trust” in your will, you can avoid some of these problems.

Owning a house, a car, furnishings, and normal personal effects does not affect eligibility for SSI or Medicaid. But other assets, including cash in the bank, will disqualify your loved one from benefits. For example, if you leave your loved one $10,000 in cash, he or she won’t be able to get SSI or Medicaid.

How a Special Needs Trust Can Help

A way around losing eligibility for SSI or Medicaid is to create what’s called a “special needs trust” in your will or living trust. Instead of leaving property directly to your loved one, you leave it to the special needs trust.

You also choose someone to serve as trustee, who will have complete discretion over the trust property and will be in charge of spending money on your loved one’s behalf. Because your loved one will have no control over the money, SSI and Medicaid administrators will ignore the trust property for program eligibility purposes. The trust ends when it’s no longer needed — commonly, at the beneficiary’s death or when the trust funds have all been spent.

How Trust Funds Can Be Spent

The trustee can’t give money directly to your loved one — that could interfere with eligibility for SSI and Medicaid. But the trustee can spend trust assets to buy a wide variety of goods and services for your loved one. Special needs trust funds are commonly used to pay for personal care attendants, vacations, home furnishings, out-of-pocket medical and dental expenses, education, recreation, vehicles, and physical rehabilitation.

Thank you, Senator John Cornyn!

It has been EATING at me that we got declined for SSI because of our income (which is not that great for a family of five!).  So, you know me, I decided to take action!  It is just WRONG that people who need assistance don’t receive it, especially if they have been paying into the system for decades! 

I wrote a letter to Senators John Cornyn and Kay Bailey Hutchison, our Texas senators, about our situation last week.  I ended the letter asking for help with that issue as well as “In addition to requesting assistance from your office to obtain eligibility, I would like to work with your office to alter the eligibility requirements for individuals with severe chronic medical issues to obtain SSI benefits.“

I also wrote our local congressman, Kevin Brady.  Kevin Brady’s office sent me an “I’m sorry but that is the way it is” letter with a phone number to call the state senator to see if there are other assistance programs available.  Not quite what I was looking for. 

Today, less than a week later, I received a letter back from Senator Cornyn’s office:

“Thank you for your recent correspondence and for bringing this matter to my attention.  The decisions of the federal agencies have a direct impact on the lives of many Texans.  For that reason, I understand the iportance of this issue to you.  As your United States Senator, I am happy to offer my assistance.

However, the Privacy Act of 1974 requires me to have your written authorization before obtaining personal information from a federal agency on your behalf.  If you would like for me to proceed with a congressional inquiry, please complete, sign, and return the enclosed form to my office…It is a priviledge to represent you in the United States Senate.  I will await your response.”

How awesome is this!   I don’t know how a “congressional inquiry” proceeds and what exactly it means, but it has to mean something!

Are we being irresponsible parents?

At the fundraising meeting a couple of nights ago, a good friend brought up that they were worried about us financially, and they felt that the fundraiser should be focused on Hannah and not on raising funds for research.  They also felt that people would be more willing to donate to a family instead of a “cause” at a neighborhood event.

After talking to a few long-time friends about this, they agreed that these friends were looking out for us, probably when we weren’t looking out for ourselves.  

It made me really think over the last couple of days (like I haven’t been doing that enough lately — see what happens when I slow down?) about our financial situation.  Yes, it sucks.  Now that I am no longer bringing in an income, we are living off our savings to make up for that income.  I know it won’t last forever. 

I have NO problem with the fundraiser and raising money for GD23 research, because that is the only shot we have of saving Hannah’s life.  Yet, I don’t want to be considered a personal charity case, either.  I don’t know why it is so hard for me to accept people wanting to help us personally like that.  But are we being irresponsible parents by trying so hard to raise money for research and not thinking of ourselves and our family?  Yet, if we do accept money for ourselves and we lose Hannah, I’m not sure I could handle the guilt of thinking that we didn’t try everything we could to save her.  Then what about Ethan and Abby’s future if we are forced into a more serious financial situation? 

My brain hurts.  I wish I knew what to do, what was the right answer.   Objectively, if it was someone else’s situation, I would tell them they had to protect their family first.  But in my heart, I don’t know if I could handle the guilt if we lose Hannah because we didn’t try everything we could.

Cost of Hannah’s first Cerezyme treatment

This was the cost of the Infusion Center, the 3+ hours we were there, as well as the cost of the Cerezyme for Hannah.  Remember, Cerezyme is used based on weight, and Hannah only weighs 16 pounds.   This doesn’t include all her other doctors and procedures — this is JUST her biweekly infusion.

Cerezyme – over $3300
Infusion Center – over $10,800

Appointments, Treatments, and Bills…Oh My!

Some days I feel like I make no progress.  Then there are days, like today, that I just feel completely overloaded.  To sum up….

1. Consultation with the hematologist/oncologist regarding a possible bone marrow transplant for Hannah.  When the lady called me to schedule the consult that Dr. G., the genetics doctor, recommended, I was taken aback.  From everything I’ve read about Gaucher’s Disease, a bone marrow transplant is the last line of defense when the Cerezyme (first line) and the Miglustat (second line) do not work.  Even then, the risks versus benefits are not in favor, as it doesn’t always work.  I made it clear to the lady who made the appointment that we weren’t even considering a bone marrow transplant at this point, and she apparently knew this.  So, we are meeting this doctor on the 2nd of Febrary after meeting with the Jewish Family Services to see what they have available for us.
2. Scheduling her first Cerezyme treatment.  So it looks like they are shooting for February 6th.  We went from doing one treatment at the Infusion Clinic downtown (to watch for side effects) with subsequent pediatric Home Health visits to now doing more treatments there and no Home Health yet.  I’m not sure why.  Even though it will be a pain to drive every 2 weeks, I’m not that upset only because she will be in a more controlled environment just in case she experiences side effects or something.
3. Medical Records scramble.  I’m still trying to get the medical records from the clinic downtown for Dr. S., the Gaucher’s specialist, next month.  Supposedly, at least I was told this, they will be worked on this Monday.  I sent them in on January 9th.   I’m sure I’ll have to follow up on this too.
4. The Project Charity.  I talked with Nicole who is heading up The Project Charity, an organization that is just what I needed when I first started learning that Hannah had a very rare disease.  I’m going to work with her on a community-based and interactive portion of their site to help other families, especially those that don’t have access to experienced medical professionals in their area.   She has fantastic ideas for the future of this program, big time, and I am so excited to be a part of it and get involved.
5. Got my eye appointment in finally.  I had to postpone it three times because of various appointments for Hannah that popped up the same time I happened to schedule this.  Fortunately, my eyes are still healthy, and my contact prescription hasn’t changed (in about 15 years!).  Note to self…order contacts!
6. I picked Little Girl A up at 2:15 PM today instead of 4:30 PM at school.  She was already at the window waving at me when I drove up.  You could see the huge grin on her face.  Her teacher told me that she had been saying all day that I was going to pick her up early.  While she was getting her stuff ready, I said three different times that I won’t do this again and that she will have to stay the whole day, and she said “she knows.”  We will see.
7. Fighting with the insurance company/laboratory about this dang $400+ lab bill from three months ago.  The doctor or laboratory coded it wrong, and the insurance company won’t cover it.  Trying to get someone to fix this for us is a nightmare.   Everyone passes it off to someone else.  Now, we got a deliquency notice, and my insurance rep said that basically we should pay it now (the lab bill) instead of waiting until it hits our credit.  Great.

Other than that, nothing much else happened today!

Why should I have to pay into a system I can’t benefit from when I need it?

Yeah, we got DENIED immediately for supplemental security income (SSI) for disability assistance (Gaucher’s Disease is considered a “disability” as it lasts longer than 12 months and requires continual treatment). Once she asked my husband’s income, well, that was pretty much the end of the interview. The thing that really bothers me is that we aren’t wealthy people, we are middle class. Since I got put on bedrest in early June last year, we have been supplementing his income with our savings. With Hannah’s situation, I haven’t been able to go back to work. Now knowing that she is going to have IV treatments every two weeks, developmental therapy every other week, occupational therapy every week, not to mention a whole multitude of doctors appointments, I don’t know how I can go back to a “day job” since all of this happens during the week, especially with 2 other kids. I thought about going back to medical transcriptioning (what I was doing before I got put on bedrest) — but work was so scarce even before I left, I’m not even sure that is an option now since my hours would have to be so sporatic.

They don’t care that a substantial portion of our income will now be going to go to medical treatments even after the insurance company pays what they said they will! Even if my husband earned $1000 less a month, we would only qualify for $84 a month. Basically, unless you are living just above the poverty level with our family of five, you don’t qualify — regardless of your needs!

I asked if we could appeal their decision. She said “of course,” but it would continue to be denied because of our income. If we HAD the income they think we have, then we wouldn’t need the assistance!

What pisses me off, and I am pissed with “the system,” is that why do I have to pay for something that I can’t benefit from when I truly need the help? Seriously, that is just not right.

Insurance coverage, round 1

I say “round 1″ because after everything I’ve read, this is going to be a long process to get Hannah covered and to find out exactly what Aetna will end up covering.

Apparently it isn’t as straight forward as 90%/10% (we cover 10%) and a yearly max-out-of-pocket like our coverage says. Basically, Aetna, our doctor’s hospital group, and Genzyme (who make the cerezyme) are going to “negotiate” a payment, and then it has to go to the Aetna review board for approval. I would love to be a fly on that wall! It is my understanding that once the review board goes through and comes up with what Aetna will pay and what we are responsible for, then I’ll hear back. Many people I’ve talked to said that they have had to appeal the decision, some with favorable outcomes and some with no change.

The only positive so far is that Aetna already has active codes for the ERT (enzyme replacement therapy) and the process for it, so Hannah won’t have to go through a precertification process before getting started. It should save us some time.

I’m hoping to hear back from our Genzyme rep who is working with Aetna and our doctors. Thank goodness for her… she at least is getting us answers and a lot faster than I could!

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