CFPC Chat Transcript

Guest Chat - March 16, 2010

Tom Nurse - "Future Planning"

Moderator:

We'll start by allowing Tom to introduce himself and make an opening statement about today's topic, Future Planning.

Mr. Nurse:

Good morning and welcome

My name is Tom Nurse. I am the father of two children and have been married to my wife for 27 years. Our 18 year old daughter was born 3 months premature with resulting cerebral palsy and she has changed our family course forever both with unexpected lessons and joys and also significant increased responsibility for her care and well being As a result, my wife and I had concerns about how things would work out into the future regarding Shelby's care because she requires total physical care.

This reality led to us developing a Special Needs Plan for our family that involved both legal and financial, as well as family decisions about how we want the future to work Today I am a professional Special Needs Planner and I work with families, having discussions and helping them plan for the future. That is the introductory statement.

Please feel free to submit your questions as I begin a brief presentation.

So what is Future Planning? Future Planning is developing and coordinating programs and services within the context of your family.

The question that needs to be asked by the family is: Who is going to pay for all the special needs care I provide, in the future. I mean into the future, as we age, maybe become elderly and disabled ourselves, and then one day we're not here.

Without question, families are the most valuable and critical part of the care of someone with special needs I say that not only as a father, but with validation by a study done by the AARP titled "Valuing the Invaluable; A New Look at the Economic Value of Family Care-giving." This study talked about the systems of care giving for someone beyond a child.

The largest source of funding, bigger than Medicaid or Medicare, is the uncompensated care provided by families - worth over $375 billion per year.

So why is special needs planning so important? Because special needs, in and of themselves pose additional unique challenges, whether they be medical, behavioral, or physical care, etc. It takes time to do, to help. That's where this comes from.

When talking with families, one of the most significant concerns is: Who's going to take care of my kid when I'm not here, and what about their quality of life?

There is almost no public funding for quality of life which may mean: cable TV, going to a movie, visiting family, going to church, transportation, having a life beyond poverty. Families are the primary funders of quality of life for those with the most significant needs.

However, another huge concern is: Where will health care come from for someone with special needs. Medicaid has become a primary funder of health care for adults with special needs but Medicaid is also a poverty health care program so this has created a disconnection between the economic valuable supports that families provide or pay for and access to programs like Medicaid that require poverty.

In 1993, Congress created laws to allow for Special Needs Trusts. These laws created a way for families to leave assets, either now or into the future, for the benefit of someone with special needs and these assets will not be considered as the individual's when determining financial eligibility for programs like Medicaid and SSI (Supplemental Security Income). The planning involves being able to go from where you all are today in your family to how things could work over the next 20, 30, 40 years or more because life expectancies of people with special needs has increased dramatically and far more individuals are outliving their parents.

Based upon the significance of the disabilities, families are now confronted with the challenges of planning for two generations of retirement their own, and their adult child's. This also creates opportunities to explore what is most important to a family in regards to what does quality of life mean to their family and to that individual how siblings will be involved. This effort can really bring families together in discussing an issue that people worry about but don't typically talk about. So the bottom line is: Families are valuable.

Programs that require limited assets and income may be essential so Special Needs Planning, Special Needs Trusts provide a great opportunity to improve options in quality of life for individuals with special needs and their families.

People ask: When should we start doing this planning?

And the truth is, in some ways, we have from the beginning as families have had to adapt and adjust to the life that is, rather than perhaps to the life that was expected.

For school-aged participants, the IEP and the Transition IEP are opportunities to start building for the future starting as soon as possible Access to education and opportunity has tremendous impact on future options.

Focusing on independent living and community participation within the Transition IEP is an opportunity to focus your attention on what families do, meaning reality is, most community opportunities and participation is funded by families. So building those skills throughout the school year, working on skills related to independent living, can start as early as Pre-K but no later than 14. The idea is that, what we do with children, what opportunities children have and utilize can have great impact on what options they have as adults.

The specifics of this future plan is unique to each family based upon their opportunities, skills, resources so it takes family leadership to drive the discussion if you want it to be about your family.

Are there any questions so far? Okay – let’s take a quiz…

When we look at future planning, do you as a family have a vision of who will provide the care and support you provide, in the future?

Is your child or adult eligible for SSI, Medicaid, Med Waiver, or Vocational Rehab?

Do you have an understanding of how SSI and SSDI (Social Security Disability Income) benefits work?

Have you identified or will your child need a guardian? guardian advocate? or trustee?

(You can either answer out loud here, or just to yourself.)

Have you set aside money - do you have a written letter of intent?

Are any of your children, whether they have a disability or not, excluded in your will?

Do you have a will?

Have you set up a special needs trust to preserve government benefits?

Have you coordinated your planning with relatives?

Will your child be able to earn enough to care for him or herself?

Will your child have adequate insurance?

How will the needs of my child impact my retirement or ability to retire?

These are complex questions that require soul-searching and work to answer.

Most particularly, a letter of intent is not a legal document but a download of what's important that you know and that you want to have happen or not happen regarding your child or adult with special needs

A letter of intent does not need to even be written - it can be videotaped but it is important for those who have been identified as future caregivers to know:

who the doctors are what's the medications,
the health history,
educational history,
behavioral history
what someone likes or doesn't like
who is the doctor you wouldn't send your dog back to
things you don't want to have happen
things you think are important
like, maybe, I want my child to live in their own home
I want them to see their brothers and sisters
I want them to go to Disney once a year, etc.

A letter of intent is a vision, or dream, hope of the future.

The case of Terry Schiavo hinged on the lack of a letter of intent or advance directive. Regardless of your views about that highly emotional issue, the lesson learned is that it is far better for your intentions to be known than to be battled in court.

On the other hand, it's also important to know the things that will make someone happy, what makes life meaningful and what things are essential. Many of these things, again, cost money. That’s why it is so critical to connect the values and intents of a family with the legal and financial work that puts those dreams into place. It's a balance between making it through another day, while thinking about 10, 20, 30, 40 years from now and it may require help guiding a family through that conversation.

That's what I help families do. If I can be of any assistance, please feel free to contact me. My email is tnurse@snadvice.com.

So - what questions do you all have?

Moderator

We have about 14 minutes left of this chat hour - please take advantage of having Tom here - and ask any questions you might have about future planning

Question

How do we get a special needs trust?

Answer

There are three types in which one or a combination you might use would depend on your special situation.

Pooled Special Needs Trusts are available through the internet and can be useful for smaller amounts of money.

A first-party trust would be written by an attorney and is used mostly for settlements, legal settlements and direct inheritances to an individual that needs to be sheltered.

A third-party special needs trust is also drafted by an attorney and is utilized mostly for family inheritance and succession planning, meaning I need to take care of the child with special needs first - and anything remaining would go to the other children or heirs secondarily.

When it comes to Special Needs Law, it is critical to have an attorney who is experienced with special needs law.

Professionally, I refer people to special needs attorneys routinely.

The special needs trust should be looked at as the receptacle for all the planning, meaning that the trust is a legal "bucket" where assets can be placed, now or into the future. Planning involves the how's that are going to happen.

Any other questions...

Question

Are there any attorneys that charge reasonable fees?

Answer

Yes. As a matter of fact, in the pooled trust, any cost can be deferred until money arrives. A pooled trust can cost as little as - around $750.

Question

I was thinking more of a first party trust.

Answer

I would be happy to talk offline, after the chat - my number is 727-403-3513

Question

You have touched a lot of areas I have considered but have put it off.

Answer

Let's face it - these are tough topics for anyone to talk about but I've had the pleasure of seeing the profound relief that comes from having things in place rather than worrying.

It takes time and effort to work through the discussion but I have seen so many families come together, relieved to have finally worked through the vision of the future.

Moderator

We have just 4 minutes left - so I'm going to ask Tom to make one final statement to close our session.

Mr. Nurse

Thank you for today, I hope you found it helpful. Make the time to talk this through in your family. Get the professional help to put things in place. Thank you for the love and care you provide every day.

Moderator

Thanks everyone for your participation. We will be posting a transcript of this chat session on our website soon. Thanks again to Tom Nurse for sharing your expertise.

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