Alexis asks: “How do I best make arrangements for the physical care (housing, etc.) of my daughter when I am no longer around?”
Alexis, thank you for your question. This is a concern that we hear from every family we meet. It is truly at the core of planning for your daughter’s future. I recommend you work through a series of steps in securing your daughter’s future:
- Investigate organizations in your area that provide housing for individuals with autism and schedule a time to meet with them. Depending on your daughter’s abilities, there will likely be a number of options including Independent Living Apartments with supervision, Group Home, AFL (Alternative Family Living), and, depending on your family situation, some organizations will work with you on customizing a housing option for your daughter.
- Once you have determined the options in your area, now it is time to determine the financial cost to those options. It is very common that a majority of the cost will be covered by government benefits such as SSI (Supplemental Security Income) and Medicaid; however, those programs do not cover all the costs. It is important to understand the amount of money you will need to leave your daughter in order for her to have the life you want her to have when you are no longer here.
- Decide on how you will fund your daughter’s needs.
- Use existing assets you currently have
- At your death, leave all your assets to your daughter (but do not leave them to her directly or she will forfeit SSI and Medicaid if those assets total more than $2,000)
- Buy life insurance with a death benefit that equals the amount your daughter will need
- Set up a Special Needs Trust
- This is a legal tool that must be written by a qualified Special Needs Attorney
- You can leave your assets and life insurance to this Special Needs Trust which will be used for your daughter’s benefit, but it will protect her continued qualification for SSI and Medicaid
- Communicate Your Plan
- It is important that you communicate your plans with extended family members and friends so that all people who are involved in your daughter’s life are informed. By doing this, you are ensuring that all people who care about your daughter are reading from the same page, and that your wishes for your daughter will be carried out appropriately.
We do recommend that you find professionals to help you in creating your plan and in carrying it out. Due to the complexity of government benefits, taxes, and legal issues there are many pitfalls that you will want to avoid, and a qualified guide can help you do just that. Please visit our website to download our Complimentary Guidebook on Special Needs Planning, which also includes Interview Questions that you can use to find a qualified professional.
For more information on how to prepare for the future, be sure to contact a financial advisor who specializes in serving families with special needs. A Special Needs Plan is driven by what they call Unleash L.I.F.E.™- L.I.F.E. meaning Lasting Independence For Everyone™. This is accomplished with education, action, and support in the creation, implementation, and continued monitoring of a specifically designed lifelong and integrated plan for your family: parents, caregivers, your loved one with special needs and their siblings.
This article was featured in Issue 48 – Connecting and Communicating with Autism