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Special Needs Planning In Five Steps - Part 1

Mom playing with her daughter with special needs.

If you have a child with special needs, you know they’ll need extra planning to make sure they’re well cared for in the future. But Special Needs Planning can easily end up on the back-burner when you’re juggling multiple therapy appointments, IEP meetings, and the many other challenges that can happen when supporting a child with special needs. You may also find that your biggest roadblock to completing Special Needs Planning is your own fear of disability and death.

One way through these fears is to take the process one step at a time and view it as a plan that benefits your entire family today, not just as a plan for what happens when you are no longer around (though a good plan will do that too!).

To get started, let’s break Special Needs Planning down into five steps:

1 | Learn How Special Needs Planning Can Benefit Your Family

Special Needs Planning means creating a plan for continuous, consistent support for individuals with special needs so they can live their best lives while maintaining a tailored balance of autonomy and protection. To achieve these goals, most families need the support of public benefits in addition to the private resources of the family.

Public benefits like Supplemental Security Income (SSI) and Medicaid contribute essential support for individuals who meet Social Security Administration criteria for being “disabled.” While public benefits are meager in some respects – few can survive solely on an SSI maximum benefit of $941 per month, for example – Medicaid coverage can provide robust support beyond ordinary health insurance. This can include job exploration and coaching, community integration and day service programs, and even residential care.

However, an individual with a disability must meet certain low-income requirements to qualify for these programs, and any change in the person’s income may result in the loss or disruption of these benefits.

The foundational fact of Special Needs Planning is this: Gifts or inheritances given directly to individuals with disabilities disrupt the most essential public benefits like SSI, Medicaid, and Housing and Urban Development (HUD) subsidies.

Even paying rent for an adult disabled individual or allowing them to live with you rent-free can decrease SSI benefits unless handled properly. Thankfully, Special Needs Planning Tools like Special Needs Trusts (also called “supplemental needs trusts” or “SNTs”) and ABLE accounts make it possible for families and individuals with disabilities to maximize these public benefits to enhance their quality of life while preserving family assets.

If this sounds overwhelming, don’t worry. We can help you create a Special Needs Plan that balances the support your child needs with the needs of your entire family through our heart-centered, counseling-based approach to planning.

2 | Identify The Best Level of Support for Your Child

We will help you envision your child with special needs living their best life, first with your support, and then when it is no longer possible for you to care for them due to death or disability. What support do they need now and what support do you imagine they’ll need in the future to have the best possible life?

With a clear vision, we can help you to map out the best plan, ensuring that plan is properly funded, and that you’ve properly incentivized the people you want caring for your child to do so.

As your child approaches 18 years of age, this step will also involve exploring whether a conservatorship, guardianship, or a supported decision-making process will best serve your child. In general, in a conservatorship or guardianship, a court removes certain rights and responsibilities of the individual and transfers them to a conservator or legal guardian, who then is responsible to the court for exercising those duties and powers in the best interests of the individual with special needs.

By contrast, in supported decision-making, individuals with special needs choose and appoint agents to serve under Powers of Attorney for healthcare and finances. The choice between these options will depend on the individual’s capacity under state law and on their vulnerability to exploitation.

Parents of children with special needs will also need to identify other family members, friends, and agencies who can provide support alongside themselves. Even if a parent meets all the needs of an individual with special needs alone, this can result in an abrupt transition to a new caregiver when that parent has an accident or medical event, or when that parent dies.

Most individuals with special needs struggle with such abrupt changes, and we believe these individuals are better served by a broader care team that will one day create a more gradual transition in caregivers.

Helping You Start Your Special Needs Planning Journey

Whether you recently received a diagnosis that your child has special needs, or you’ve been caring for an individual with special needs for a long time, the idea of formally creating a Special Needs Plan can feel overwhelming. But no matter what stage your family is in, it is never too late or too early to start Special Needs Planning.

We understand that at times seeking a proper diagnosis, therapy, and educational support must take priority for your loved one with special needs. To some extent, we must secure the present before we look to secure the future. But at the same time, the financial and social results of delaying your Special Needs Planning can have profound consequences. That’s why the future of your loved one with special needs can best be secured through planning sooner rather than later.

When you’re ready to take the first step toward Special Needs Planning or revisit planning you’ve already done that may not feel complete, give us a call. We’d be honored to help your family build and implement a plan that will serve your loved one with special needs and your entire family for years to come.

And don’t forget to check back later this month for part two of this series.

Contact Entrusted Legacy Law at 412-347-1731 or click here to schedule a complimentary 15-Minute call.


This article is a service of Sharek Law Office, LLC. We don’t just draft documents; we ensure you make informed and empowered decisions about life and death, for yourself and the people you love. That's why we offer a Life and Legacy Planning Session, during which you will get more financially organized than you’ve ever been before, and make all the best choices for the people you love. You can begin by calling our office today to schedule a Life and Legacy Planning Session and mention this article to find out how to get this $750 session at no charge. Please note this is educational content only and is not intended to act as legal advice.

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