We started our journey of parenting a kid with special needs at her birth, our first child, Lorelai, with a diagnosis of Down syndrome (later to add Sensory Processing Disorder, Autism Spectrum Disorder, and PANDAS to name a few.)  We knew ffrom the first or second week that not only was our journey as new parents going to very different, but all of our plans for the future needed to change. We were already thinking long term within the first few weeks because I’m a planner; It’s a weakness and an asset. Before she was even two months old we had a meeting set up with a lawyer.   

Finding a lawyer familiar with the various needs of our unique kid was not that difficult for me. I just called a friend who happened to be an attorney and she did a little research for me. However, I quickly learned that finding a lawyer knowledgeable in all of the actual details themselves isn’t so easy. There are specialists, but the costs can be extreme and we were definitely not prepared for that aspect. Creating a will, powers of attorney for health/medical, and a special needs trust can run a range of prices from anywhere between $400 and $8,000. We’ve now learned that it’s always a good idea to save and be prepared for these costs and maybe even more so than we actually anticipate.

At our first meeting, we were educated on the different arrangements that we could make. Our attorney had a packet full of questions and information to fill out regarding our lives. We picked our potential powers of attorney and our list of potential caregivers should the unimaginable happen to either my husband or I. There are four sets on our list with the possibility of adding more at a later date. Things change often, especially with the addition of multiple diagnoses. We laid out all of our assets, monetary and otherwise and we discussed who would get what, when and how. We built in the plan for having more children and then how this would impact them as well. That’s where the real education began.

There are several types of trust funds and many people either aren’t aware of them or don’t know the difference. We learned that the government, who supplies us with many “benefits” for the care of our daughter over her life, will confiscate any leftover money in a first party special needs trust fund as a re-payment of services. We’d like to offer any future money to our other children or Lorelai’s future caregivers, so that particular option was out for us. Not a cent of the money intended for our daughter’s long-term care would ever be in her name or possession. For this reason, we chose to create a third-party special needs trust, unfunded until there is a real financial incentive to fund it.

Less paperwork is always a plus for me too. Our directions state that our life insurance (which we increased dramatically at the time), all of our accounts, the sale of all goods and properties in our estate, and any gifted monies are to be made payable to the trust. In the third party trust, none of the assets are to have ever been in Lorelai’s name, only the name of the trust, which benefits her. This third party trust is then protected from reimbursement to the government. Now, because we have other children, the legal language in the trust fund splits all of our assets between our kids and restricts the age in which the trust can be accessed. (We are always cautious when it comes to money!)

The ABLE account came into existence shortly after we created our third party trust fund. It sounds great when you research all the perks and benefits of opening an ABLE account; It’s similar to a savings or checking account in that it’s a place to deposit money into for our daughter to use as she needs it but without it impacting her ability to get Social Security benefits (as having it placed in a regular bank or credit union would). However, there are limits to how much you can put into these accounts per year as well as per month and limits on how much you can take out per month as well. The government also has the option to keep these funds down the road in certain circumstances. When Lorelai is older and hopefully earning her own money while working and needs access to her funds on a daily basis, we will take advantage of this type of account more so than we would now, while she’s younger. But for now we are waiting to fund any of the accounts available until there is a real need to.

Every stage of a child’s life comes with a different set of needs. As she grows, the independence that our daughter achieves will dictate the financial plan that we will put into place at that time. Our assets and her assets will remain in our accounts for ease in tax filing and will more accordingly when it is appropriate. With the laws regarding financial limits of various accounts always changing it’s always a good idea to consult an attorney and an accountant to find out where your assets will be safest and have the least amount of loss due to fees, penalties or taxes.

Providing for our kids in this economy can be stressful and it really takes a village. A big, big village.