The System: Four Keys to Special Needs Planning

bunch of keysHere’s a brief explanation of the Fearless Family Four Keys System to Special Needs Planning:

If your child with a developmental or other type of disability is not going to be able to care for their own personal and financial needs in adulthood, you will need to set up a system that can ensure they are cared for to the end of their life.  That involves preparation in four key areas.

KEY ONE: Build a Community of Caregivers

Your child will need more than one person, more than a guardian, to help them through life.  People have different roles and purposes in your child’s life and all need to be welcomed and “in the loop” on your child on a regular basis.  Be sure to give everyone permission to talk to each other and speak up about your child.

KEY TWO: Financial Supports

Government benefits are the cornerstone for adults who have been disabled since childhood.  SSI cash benefits from social security along with Medicaid will give your child access to a variety of supports designed to allow them to remain living in the community.  Parents and other family members can also provide substantial amounts of money to supplement the government benefits through inheritance, life insurance, and pension benefits, but ONLY if its done the right way.

KEY THREE: Transition Tools

At various points in your child’s life there will be transitions from one caregiver to another.  You must provide the information needed to make that transition a smooth one.  Everything from lists of doctors and medications to contact information for family and friends to the parent’s priorities for the individual’s life should be written down and made easily accessible to anyone who cares for your child.

KEY FOUR: Legal Documents

The best made plans will only work as you intend if you provide the legal documents needed to enforce the plan.  Court sanctioned guardians, special needs trusts with well chosen trustees, designations of agents and other legal planning tools are a must in order to ensure that your plan can work properly.

Parker Counsel special needs law firm can help get you started on this system. Reach us by phone: 833-RED-BOOT (833-733-2668) by email: legal@parkercounsel.com or schedule a short informational call at Calendly.

When love looks like dropping a potato sack

Worry weighs a lot

There is no reason to carry around a 15 pound bag of potatoes everywhere you go.  Unless you are headed home from the grocery store or are on your way to a cookout, you don’t need the bag of potatoes until its time to use them. And if you don’t plan to cook potatoes, why in the world would you carry the bag around at all? potato sack

And yet, we parents of special needs children, we parents of children that we know will never be able to fully support themselves or fully care for themselves, we choose to carry around a bag of potatoes simply because we don’t know how to put it down.

So what is the bag of potatoes we are carrying?  It’s the worry about our child’s future.  It’s the worry about who will care for them, who will watch over them, who will pay for them –  and who will love them the way we do when we are gone.  That’s our own special bag of potatoes.  And the burden of carrying it saps energy and strength that could be much better spent elsewhere.

It takes effort but its worth it

There are things you can do to prepare your child for life when you are no longer around.  But first you have to know what they are, then you have to have some idea of how to do them, and then you have to prioritize it enough so that taking those actions you need to prepare your plan can bust through the already overloaded days that special needs parents have – hands on care, driving to school, to therapy, calling insurance companies, supervising, cleaning up after, trying to make a buck, and oh yes, washing your own hair every now and then and trying to get a little sleep at least every few days.

Images that show what it feels like to suffer from mental illness. Bringing the inside to the outside.

Your time is already completely taken up with getting through each day.  But that is precisely why it is so important to hit overdrive for a little while and take care of your planning for the future.  When you do that, you will actually free up the mental energy you have assigned to worrying about the future.  When you worry less, your body has less stress, and you actually feel better.  All the things that accompany stress and worry, like tense muscles, stomach and intestinal problems, low energy, more illnesses, will be relieved a bit.  Thinking about the future is not your only source of worry, but having seen the physical relief play out on our clients the moment they sign all their planning documents, it is probably more of a worry than you have acknowledged to yourself.

Interdisciplinary problems need interdisciplinary approaches

I have to confess here, that as a mom of two special needs children of my own, these are the same planning things that I had to make myself do.  My kids were teenagers before I shifted my law practice into this area, so I actually was exactly like all of you when my kids were young.  I didn’t know very much about what I needed to do, but I did know I needed to do something.  I wasn’t exactly sure how to best find out what that something was.  Estate planning had to be involved, right? So I chose a law firm and made an appointment and had a consultation and filled out some paperwork and signed some documents.  But at the end of it I knew barely more than I had known going into it because the lawyers didn’t really talk to me.  I explained my situation and they asked a few questions and that was about it.  They did the legal actions they knew to do and  that’s all that was dealt with.  It had nothing to do with planning for my child, it had only to do with writing a will and a trust.

Context Matters

Think of it this way:  if you or your loved has a cough, you go to the doctor, you get a diagnosis and you get a treatment of some kind.  Simple response to simple problem.  But imagine you or loved one – and some of you have been in this very situation – has several symptoms.  Say, a cough, a limp, and an intestinal pain.  But the doctor you go to only deals with coughs and doesn’t even have an interest in the limp or the pain.  So you go to a doctor that treats limps, but she doesn’t want to know what the cough doctor said, it doesn’t have anything to do with her.  And then you go to a doctor for the intestinal pain who says nothing is showing up on the tests, you must be ok, and you ask if the cough and limp could be related and the doctor says go ask the cough and limp doctor.  You can’t get anyone to look at the entire problem, they are only willing to look at one individual body part for a problem that may or may not be related to the other problems but you can’t even find out because none of the doctors will consider the possibility.

This is what it is like to try and plan for a special needs child when you don’t have the right information because the situation hasn’t been looked at as a whole, interconnected puzzle.  In isolation, you may have a series of good steps, but they may or may not all work together because no one has actually stood back and looked at the whole picture before starting to guide you through making a plan.

We see living people

This is why I built a law firm whose mission is to help special needs families.  I didn’t create an estate planning firm, although we do that.  I didn’t create a trusts firm, although we do that, too.  Our firm does a lot of individual things, but they are all in service to what we really do:  Planning for special needs families.   Or, as I like to say, our firm specializes in putting down potato sacks.make it happen

You may not know how you can possibly prepare for your child’s needs long into the future, but we do.  Let us help. Download the Special Needs Planning Blueprint on this page, attend one of our online workshops or Q&A sessions on the Four Keys to Special Needs Planning, or go ahead and schedule a personal consultation.   Whatever it takes, we will show you how to get there.

Parker Counsel Legal Services can help you understand how to use special needs trusts and ABLE accounts together in a well designed plan to provide for the future needs of your child with a special need. We serve families in Texas, Massachusetts, New Jersey, and New Hampshire. Contact us for a consultation at 833-RED-BOOT (833-733-2668) or legal@parkercounsel.com or schedule a short informational phone call at Calendly.

The Basics of Special Needs Trusts

What is a Special Needs Trust?   Special needs trusts (SNT) are  a tool that lets families provide money to take care of their adult kids without preventing them from receiving medicaid and services from related government programs.

Why do you need an SNT?  Medicaid benefits are available to people who 1) have a disability,  2) have very low income, and 3) have very few assets.   To qualify for medicaid, an individual cannot make more than approximately $1300 a month (specific amounts can be found on the social security website) and cannot have assets totaling more than $2000 (there are some items that are exempt from inclusion in the asset determination, like a home and a vehicle used for transportation).   If a parent is able to provide some money to make a good life for their child either through gift, inheritance or life insurance, the SNT is the way to do it.  Without the SNT, whatever money the parent leaves the child will have to be spent on basic care before government benefits can be used.

How does the SNT work?  Money or property the parent wants to make available to the child is put in the trust.  Most families use the trust to hold inheritance money, or they obtain life insurance that will be paid to the trust.  A trustee is appointed to spend the money on the child in accordance with the wishes of the parents or at the trustees discretion.  In order for the SNT to work for preserving medicaid eligibility, the money is to be used only for things that are NOT covered by government benefits, and cannot be paid directly to the child .

What happens to the money in the SNT if the child dies?  There are actually two types of SNT’s.  The first is created by parents or grandparents for the benefit of the child and funded with their own money and money from any person other than the child.  Money left in the trust upon the death of the child is distributed to beneficiaries who were named in the trust itself at the time it was created. Commonly, remaining money is left either to siblings or their children, or to a charity.

The other type of SNT is one that is created with money that actually belongs to the person with the disability.  These trusts are common when the disability is the result of an accident and there is a lawsuit or damages paid to the individual.  These may also be created if a parent dies and leaves money outright to the child without creating an SNT first. For these trusts, the money is used during the lifetime of the individual in the same way as for a trust created with other people’s money, and the individual may also receive government benefits.  But upon death, any money in the trust must first be used to repay the state for benefits received by the individual.

If you need to set up a special needs trust for your own child or grandchild, we are happy to help you out.  Parker Counsel special needs law firm can be reached by phone: 833-RED-BOOT (833-733-2668)  email: legal@parkercounsel.com or schedule a short informational phone call at Calendly.