Closing the Gaps in the Safety Net: Special Needs Planning for Families

Transcript

Introduction: Special Needs Law Month

I’m ACTEC Fellow Julia Meister from Cincinnati, Ohio. October is Special Needs Law month, making this the perfect time to focus on strategies to help families navigate these important and often complex challenges.

I’m joined today by ACTEC Fellow Tara Anne Pleat from Clifton Park, New York. Tara has shared her expertise in several ACTEC Estate Planning Essentials videos, including Alternatives to Guardianship and Tips for Seniors. She brings a wealth of knowledge in special needs law, and today we will explore how to help families strengthen their safety nets and plan confidently for the future. Welcome, Tara.

Tara Anne Pleat:  Thank you.

What Is Special Needs Planning?

Julia Meister:  Tara, let’s begin. What is special needs planning and why is it such a critical issue for families today?

Tara Anne Pleat:  I would define special needs planning as planning for the future of a loved one with a disability that is likely receiving, or likely to receive in the future, means tested government benefits like supplemental security income or Medicaid-funded services through a state agency.

And it’s a critical issue for families for a number of different reasons, not the least of which is wanting to ensure that they’re providing long-term care and support for the benefit of their loved one when they may not be able to do it themselves. And that comes in the form of setting aside funds, ensuring that there’s appropriate legal advocacy and support. And they’re doing that at the same time that they’re trying to preserve, I think, the dignity, independence, and as much autonomy as possible for their loved one.

And if they do it well — and that means different things to different people — but if they do it well, it can blend the security of government benefits with family resources so that the person, their loved one, can live as full a life as possible and with as much support as they may need.

When Should Families Begin Special Needs Planning?

Julia Meister:  When should families begin this planning and how often should they review it?

Tara Anne Pleat:  I think the answer is earlier than you think and more often than you expect. I think most parents are introduced to this kind of planning maybe at the time of a diagnosis or maybe at the time your child reaches the age of 18. But generally, I think it makes sense for families to start as soon as they can.

And what start means may mean different things to different people. For some, it’s getting involved in a special education preschool and then dealing with special education services through high school and then moving out into the service delivery world when a person might be receiving supports from a local disability service organization. But starting young gives families the time to learn the system, to test what works, to build relationships with professionals and community resources.

And it’s not one and done. Turning 18, finishing school, changes in health and finances, all of those things will be things that trigger people revisiting the plan. And I think one other point I would make is that in addition to the legal planning — wills, trusts, guardianship, supported decision-making agreements, whatever it is that’s appropriate for that particular family — those legal documents don’t always identify the things that are really of import on a day-by-day basis of what a young individual who may not be able to communicate in a traditional way is in need of.

We often will recommend to our clients that they complete something called a life planning workbook. That’s what we call it in our practice, it’s called other things in other places, but it’s basically a list of doctors, medications, if there are medications, likes, dislikes, preferences, community support providers, close acquaintances and friends, that kind of thing.

I have a now 21-year-old son who has an autism diagnosis and my husband and I have been reworking that workbook for him every year. And we used to use his birthday as the timeline to do it. And it changed a lot when he was younger, as he was growing and maturing and it still changes, but not nearly as much. But we look at that, not necessarily the legal document, but the, what do we want somebody who is responsible for oversight, advocacy, and assistance for our son, what do we want them to know? So that they know him as a person. That’s something that we look at, if not more frequently, at least once a year. And we tie it in to his birthday. Legal documents, probably every three to five years, if not more frequently, because some familial change requires it.

Challenges Families Face in Today’s Caregiving Landscape

Julie Meister:  What kinds of challenges are families facing in today’s caregiving landscape?

Tara Anne Pleat:  I think families are facing a perfect storm, really. We’re seeing shortages nationwide of direct support professionals, the people who are employed by disability service organizations to provide community supports and assistance to these young individuals who may be outside of the regular education setting and learning independent life skills.

Our programs used to be a lot more robust than they are now, certainly in New York State and around the country. In addition, for families who are hoping their children may be able to move into a different residential arrangement, whether it’s a supported apartment, it’s a congregate living arrangement, waiting lists for those services can stretch for years and years. There’s nearly half a million people in the United States that are on wait lists for community supports and residential supports.

And in a state like mine, we don’t have wait lists per se, but we’ll say, oh, yes, the state will say, oh, yes, you qualify, you’re eligible to receive services through our state agency for individuals with disabilities. But there’s no human capital to provide those supports and services. So families have a plan, if you will, but they don’t have any people to help implement it through that state-funded system. So I think that you’ve got that as a really big issue.

And at the same time, demographics, we have more people being diagnosed at younger ages. We have seniors living longer and living to a point in time where they need their own supports. And many of those individuals are caregivers for an adult with a disability. So they’re aging themselves and still caring for their adult children. And that combination creates real stress and uncertainty for families about what’s going to happen in the future to their loved ones.

How Families Adapt When Public Supports Fall Short

Julia Meister:  So how do families adapt when these public supports fall short?

Tara Anne Pleat:  The approach that I typically recommend, and it’s easier said than done for many families, but it’s to test the system while parents are still here and available to problem solve, or the primary caregivers, if it isn’t parents. That may mean stepping back and letting siblings or other relatives or informal supports or paid supports, privately paid supports, step in; attend a planning meeting, go visit a residence that the individual is participating in, go to doctor’s appointments, whatever it may be, test that system and see what works and see what gaps appear.

I think all too often — and all of us as practitioners need to challenge our clients when they’re coming to us for advice in this space — is write down what you do on a day by day or week by week basis. Just take stock of it. Because you as a parent or as a primary caregiver, you will give unlimited time and unlimited support because that’s what you do for people that you love and that you brought into the world. Not everybody else is going to do that. And you have to evaluate whether or not you think it’s fair if you do have other children, do you want them to have that responsibility? Or do you want them to have a different kind of responsibility?

Take a look, take stock of that, because it’s a lot more than you think. And then think about what different pieces do we need to do what mom did or to do what dad does? Families are building more formal support networks, not relying on one person. And I think that’s a good thing, professionals and community resources. And it takes creativity, it takes a willingness to plan and to plan not only for what is what we’re currently facing, but what if? What is it going to be like in the future? What if we did A, B and C? Can we make this look a little bit better with the bleakness of the system that we’re all currently operating within?

The Role of Trusts and Private Funds in Special Needs Planning

Julia Meister:  What role do trusts and private funds play in bridging these gaps?

Tara Anne Pleat:  Trusts are a cornerstone of special needs planning, special needs trusts or supplemental needs trust, those two words are used interchangeably, because they allow families to set aside funds for the benefit of their loved one without jeopardizing benefits like Medicaid or supplemental security income that I mentioned before.

But the role of those funds has changed. Years ago, we would have said that those funds would have paid for vacations or luxuries or the things that the system doesn’t provide on a day-in and day-out basis. But today, increasingly, they’re used for necessities because the public system and the public supports, they’re they’re not doing what they did 10 or 15 years ago, there’s less funds. And as I said before, there’s less human capital.

When we think about this idea of a luxury, the example I will often use is that when Christmas comes around every year, we make sure my son has a Star Wars Lego set because he’s always gotten one and he loves them and he looks forward to it every year. That’s like the one consistency he knows is coming for Christmas. And I want that to continue for him. But more so I want to make sure he’s got somebody that’s providing oversight and advocacy and support for him in the way that I do and in the way that his dad does. And so those trust dollars, I expect, will probably buy Lego sets every year, but maybe not too much else by way of luxury, because what they’re really going to be buying, what those funds are going to be looking for, is a way to compensate individuals that are going to prioritize my son and replace me and replace his father as is necessary so that burden doesn’t fall completely on his younger sister. And giving her the supports that allow her to step in and do what she can do, still have her life and be the good sister that we hope and know she will be.

One Piece of Advice for Families Beginning the Journey

Julia Meister:  Tara, if you had one piece of advice for families beginning this journey, what would that be?

Tara Anne Pleat:  It would be don’t go it alone. It can feel really overwhelming. And that overwhelm comes at different times and in different ways. Initially at the time of diagnosis, maybe as years go by in school when you’re seeing maybe not as much adaptation as you would hoped you might see as a parent, it’s different. Every child is different. Their skills are different. Their needs are different and some are much more profound than others. But you don’t have to have all the answers on day one.

And the most successful families — and I don’t mean success in dollars, I mean success in planning — they take a more proactive approach. They start early and they look to surround themselves with a community, a team, however you want to define it. That team may be an attorney, a financial advisor that can help them figure out the best way to allocate the dollars they do have so that they’re setting up a nest egg for that child. Trusted allies, community supports, and with the right guidance, I think families can build a plan that can give them some peace of mind and security for tomorrow.

We have a lot of clients who really feel like they just can’t die because they don’t know what the future holds for their loved one that they provide so much support for. And the goal in this is to help give them — you can’t solve it, none of us can solve the deficiencies in the system completely but we can give them some hope, certainly, and give them some tools to make it better than it will be if we just sit back and rely wholesale on a system that is disintegrating, frankly, that so many families have relied on in the past.

Julia Meister:  Thank you so much for this, Tara. For more information on special needs and other estate planning topics, please visit actec.org.