Financial Planning: Part 1

How much money will it take to secure a meaningful and safe future for our loved one with special needs?

The short answer is a lot. The cost of care for an adult with special needs is very similar to nursing home costs which run around $60K/year. Multiply $60K x a 60-year life span and the bill tips past $3.5 million. These are conservative numbers. Depending on need, the cost can be higher and the life span longer.

How can this cost possibly be covered?

I don’t know. That’s helpful, right? What I can offer is information on what is currently available along with a strong nudge of encouragement to start planning now. Do not wait.

As you begin to sort through your options it is important to keep in mind programs can and do change frequently. There is no guarantee social security will exist in 60 years. For this reason, it is important to not rely heavily on just one channel of income for your loved one with special needs. 

Below is an overview of what we will be covering the next few weeks during the financial planning series:

Experts in the Field

I do not recommend setting up your plan without help from professionals who know the ins and outs of the law and programs. One mistake can result in the loss of income from government programs. In this series, we will be sharing the different fields of expertise and where to find help. We will even tell you how to find the person in the social security office who can actually help with your case. What we don’t have is a way to avoid being put on hold for an hour when you call. Sorry. Take what you can get.

Special Needs Trust / Revocable Living Trusts

One of the first things you will be doing is setting up a special needs trust. Trusts are used to preserve and maximize government benefits. A trust will help ensure the individual remains eligible for social security benefits. Our series will cover three types of special needs trusts, and how to choose the right team of trustees. As a bonus, we will look at revocable living trusts. How’s that for a bonus? Almost as good as an extra scoop of ice cream. Okay...maybe not. Again, take what you can get.

ABLE Accounts

ABLE accounts are new on the scene and another place some assets can be stored without affecting social security. There are many benefits with the biggest being flexibility in how money is used. For example, money in an ABLE account can be used for housing unlike money in a trust. Just as wine pairs well with cheese, ABLE accounts pair well with special needs trusts. They are better together.

Supplemental Security Income

Almost all of our kiddos will be eligible for SSI at the age of 18. However, many factors come into play such as if your adult child lives with you and also documentation of records from the doctor. In addition to SSI, we will touch on SSDI only because it’s another acronym to add to our secret special needs code language. IHSS, ABLE, SSI, SSDI...only those in our club know what we are saying.

Medicaid (Known as Medi-Cal in California)

Medicaid is a program for medical (and sometimes dental) benefits. Typically, approval for SSI is an automatic enrollment in Medicaid. In our series, we will discuss Medicaid as well as how it can be used with private insurance. 


Working is so good for the special needs adult population. Employment offers structure, purpose, socialization, productivity, and money! All of us want these in our lives. With the right supports in place, many adults with special needs are able to work. A variety of systems are in place to remain eligible for government benefits while employed. Our series will cover them in the weeks ahead.

Managing the Accounts

Discussion of who manages these financial accounts in the short term and the long term is important. Along with the discussion will be resources on what can be done if there are not family members capable of overseeing the financial plan.