Author: Grady Jennings

5 Steps Special Needs Families Should Take

FOR GOOD AND FOR BAD, ITS BECOME CONVENTIONAL WISDOM THAT MOST FAMILIES SHOULD HAVE A LIVING TRUST. HOWEVER, WHAT MOST FAMILIES DONT REALIZE IS THAT MANY ATTORNEYS HAVE LITTLE OR NO EXPERIENCE WORKING WITH SPECIAL NEEDS FAMILIES, WITH DISASTROUS RESULTS.

As the populous has become more and more financially sophisticated over the past 50 years, more families are securing for themselves greater legal and financial protections. However, with this rise of families seeking out legal and financial protections, more and more special needs families are falling into costly, disastrous misinformation and disinformation.

What is often forgotten by all parties involved is that special needs families are in a category of their own requiring particular attention to how they go about protecting their loved ones. The key is a hand-in-hand understanding of the planning and dynamics of benefits, risks, solutions, and implementation.

Sadly, it is often attorneys themselves who are the largest proponents of selling legal products that are simply not suited for the special needs family. In this short article, we discuss five steps that you and your family can take to ensure you are properly legally and financially protected. You have to help your attorney understand the dynamics of your situation.

Step One: Put down the product mindset.

Financial and legal experts are widely accessible. They are everywhere. Similarly, the products that they sell are just as omnipresent. They sell packaged products that they believe will provide most families with an acceptable level of protection, return, etc.

However, not all products are suited for special needs families. Life insurance, for example, while generally a good thing to have in traditional families, could be disastrous for the benefits of a special needs child if the processes and strategies involving our families are not understood.

Remember: it’s not a product alone that can help your family it’s the strategy that is employed through the various transitions of your special needs family members lifetime.

Step Two: Find an expert.

While the vast majority of attorneys are well intentioned, seeking to provide the highest service possible to their clients, few have experience working with special needs families in understanding the dynamics of the special needs system. More important, even if they do have experience of working with families like yours, are they immersed in the special needs and disability worlds? Are they apprised of the latest concerns for such families? The answer for most attorneys is not as a rule.

Find an expert who is immersed in both the special needs and disabilities worlds. If possible, find someone who has personal experience being within a special needs family, but also has estate planning as their main background.

Step Three: Build a plan for life not a plan for product.

As mentioned above, products can be immensely useful in helping your family, but only if they are employed with a precise strategy over the course of the various life stages of your family. Think about it – the realities that your family faces for a child before the age of 18 is quite different than those faced afterwards. Similarly, after age 18, discussions of housing and gainful employment emerge. The key is understanding that you can design the life you want for your special needs family member: this is a planning conversation, not a product conversation.

Step Four: Have your expert and friends refer you to an attorney.

Would you place your (or your family members) livelihood in the hands of an attorney discovered in the Yellow Pages or a through a Google search? Rely upon the expertise of others to guide you toward the proper specialist who can help you install the needed legal protections.

Step Five: Signing paperwork is just the start. Follow up!

In our research, we have found, time and time again, that families who engage with the living trust / special needs trust process NEVER finish. Just because a document has been signed and a trust (or two) has been created does not mean that your family member is protected. Assets must be married to your trusts in a precise way to ensure your family’s plan. So, don’t let time pass without following up with your expert and attorney, such that you can have a solid plan of action in place.

In all, know that there are people out there knowledgeable in the special needs and disability worlds that are EXPERTS in this field. You can always recognize an expert by the way they talk about your family: they should be talking PROCESS and STRATEGY over product.

Image Copyright 2015 Lightstock, LLC and is licensed by Dignity Group, Inc. and is used with permission. Photo is for illustrative purposes only. Any person depicted in the photo, if any, is a model.

4 Ways to Safeguard My Special Needs Family

WE HAVE BENEFITED FROM THE COLLECTIVE WISDOM OF HUNDREDS OF FAMILIES OVER THE PAST TEN YEARS. SOMETIMES, THE PAINFUL LESSONS OF OTHERS CAN BE THE EXAMPLE WE NEED TO SAFEGUARD OURSELVES. HERE IS SOME OF WHAT WE HAVE LEARNED.

Growing up in Southern California in what some might call a traditional family, I mentally built up a picture of what my life would look like going into my twenties, thirties, middle age and beyond.

If you’ve met with me one-on-one for a consultation or seen me speak at an event, you’ve probably heard one of the largest lessons I have learned over the course of my life: things do not always go as we plan.

When the old dreams we hold are shown to be out of sync with our reality, a new vision has the opportunity to come forth. With that comes something quite unexpected for most families:

There are questions that we must ask ourselves that most traditional families do not need to ask, all in service of our family.

On our minds are questions of healthcare, housing, gainful employment, successive caregiving, and a host of other concerns. How do we know that what we are doing is the right thing to do?

If you take anything away from this article, make it this: there are no globally right answers. The answers to your questions are as unique as YOU, your family, and your special needs family member. Accurately seeing the situation at hand matters most.

Often, I tell families that there are a few questions that they can ask themselves to help them make the best decision for all parties concerned.

What are the benefits of this decision?

Take stock of reality as it exists at this moment. What’s happening in the daily life of my family? What does the future (if I did nothing new) look like for my family?

The answers to those questions offer the picture of life as it exists today and you did nothing.

Then, ask yourself What benefits would my family enjoy if we made this decision? See how this decision impacts your answers to the two questions we started with.

What are the risks?

Likewise, what are the risks of doing nothing? If only that which is in place today was to continue 5, 10, 20 or more years into the future, what risks would arise? What risks already exist?

As you are considering this question, remember what I said earlier in this article – it’s rare that life turns out how we expect.

Then, consider what risks would exist if we made this decision at hand.

What solutions are available?

Consider, given your answers above, what solutions are available.

This is where an experienced individual is so critical. This is NOT a product strategy question. This is a PROCESS strategy conversation.

This person should be helping you answer the question, What solutions/benefits/risks are present through the various stages of life moving forward?

How do we implement the solutions we choose?

Finally, you should consider what steps need to be taken now, next year, and in the years to come to secure the decision you have made.

I cannot tell you how many families go through each of the steps above and even initiate steps and spending to potentially protect their family, only to never follow up again and finish the steps beyond.

Again, consider how there is, most likely, no one-size-fits-all, one-and-done solution. We should consider the process strategy in the future, and any great advisor should walk you through the process of implementation moving forward.

In all, remember that what others in our lives can offer best is perspective. We can use the wisdom that others have gained through their experience to ease us along our own path of experiences.

Please, we’d love to hear about your process moving forward. Send us a comment or email, or even give us a call.

Image Copyright 2015 Lightstock, LLC and is licensed by Dignity Group, Inc. and is used with permission. Photo is for illustrative purposes only. Any person depicted in the photo, if any, is a model.

How to know if this is right for you

WHEN IN DOUBT ABOUT THE LATEST AND GREATEST SOLUTION FOR SPECIAL NEEDS FAMILIES, I OFTEN RECOMMEND ASKING YOURSELF, HOW DOES THIS THING FIT INTO OUR OVERALL STRATEGY? HECK, ASK YOURSELF, WHAT IS OUR STRATEGY? IF THE ANSWER TO THAT QUESTION IS HAZY, ITS TIME TO START PLANNING.

ABLE (Achieving a Better Life Experience) Accounts were signed into law in 2014 as a government sponsored solution to a problem that many special needs families face: How do I save money for those unknown tomorrows without it affecting our loved one’s eligibility for Medicaid? Though ABLE accounts are new to the scene, fixes and products like this are not.

What I have consistently said for many years, through the experience of my own family and the families that we at the Dignity Group serve, is this: we need to have more strategy conversations than product conversations. Often, when the conversation is largely about a product (especially when its new and shiny) we are missing the larger conversation we need to be having.

What is our overall plan, anyway?

Don’t get me wrong. Over the years, I have probably seen dozens of laws, products, solutions, and fixes introduced to help ease the woes of special needs families. Many of these products were part of my family’s overall strategy for my son. Many of our families utilize such products as part of their overall strategy, but the focus should be on the concept and the process.

My point is, when considering if a product or solution is right for your family, the first thing you should think about is the overall strategy that you are building. The second thing you should consider is how this product (whatever you are considering) fits inside that strategy and your personal purposes.

As a way of helping with this topic, and the questions surrounding it, here are some dos and don’ts to help you, your family, and your expert consider solutions like ABLE accounts.

Do watch for new innovations in the law, often popularized in the news media. Innovations like these could be greatly helpful! (Perhaps.)

Don’t think that every product or solution is right for your family especially when it is something that you believe you can enact or put in place without an expert involved.

Do review your overall strategy (it should be on paper) for your special needs family member.

Don’t act as if a plan in your mind is the same thing as a plan on paper.

Do question how such a product, solution, concept or process could benefit and harm the overall strategy that you are putting in place.

Don’t believe that every product created for disabled persons or special needs families is right for your disabled or special needs loved one.

Do meet with a knowledgeable person to discuss your options.

Don’t rely upon a single opinion or friends experience as a final decision about next steps. Again, look at the strategy that you are building.

Do become a mini expert, dedicating time to research and self-educate. Do, however, watch your biases, emotions, and objectivity.

Don’t ignore or discount the potential thousands of hours that a knowledgeable person has put into educating themselves about this topic. Pay attention if they have personal experience and have worked with many other families.

Summary

Undoubtedly, I will probably receive MANY phone calls about these plans from families wanting to know if the ABLE is right for them. You can guess what I’ll ask them: How does this plan fit in your overall strategy? What is your family’s strategy? Talk to you soon.

Image Copyright 2015 Lightstock, LLC and is licensed by Dignity Group, Inc. and is used with permission. Photo is for illustrative purposes only. Any person depicted in the photo, if any, is a model.

Four Questions for Special Needs Families

WHEN IN DOUBT ABOUT THE LATEST AND GREATEST SOLUTION FOR SPECIAL NEEDS FAMILIES, I OFTEN RECOMMEND ASKING YOURSELF, HOW DOES THIS THING FIT INTO OUR OVERALL STRATEGY? HECK, ASK YOURSELF, WHAT IS OUR STRATEGY? IF THE ANSWER TO THAT QUESTION IS HAZY, ITS TIME TO START PLANNING.

My history is a testament to the notion that life is exceedingly unpredictable. If I could send myself a message in a bottle through time, one of the many things I would tell myself is, Don’t be so arrogant to think that your life, and the life of others around you, is going to turn out exactly like you expect. Then again, I know that I handled much of my life the best I could, and I know you are doing the best you can too.

This unpredictability is something I work with every day when I speak to special needs families. We are all human. When uncertainty hits us in the face, one of the ways we might react to that is by creating a plan, by choosing potential solutions, and by enlisting the help of others. Still, I constantly ask myself, Who am I to think that my life is going to turn out exactly as I plan? Who am I to think that the lives of those that I love are going to turn out exactly as I expect? This is one of my roles when working with special needs families – to be the voice of reason that says, What if things don’t turn out as you expect?

I often tell this story about preparing for those unknown tomorrows for my son, James. I considered at one point leaving my daughter a sum of money to help her in the event that I was not around to take care of him. Then I realized, Who am I to think that her life is going to turn out exactly as she or I plan? What if I left her such money and then she got divorced? Constantly, I ask families to consider the impact of unpredictable (and often unsavory) events that could happen.

When I’m working with families, our conversation typically revolves around these four central topics. For these topics, consider each question for yourself and your family.

Benefits

What benefits is my family currently taking advantage of?

What benefits, to which we have access, have we decided not to use?

With what knowledgeable person have we, recently, discussed the potential other benefits that we could potentially access?

Risks

What are, in our minds, the ultimate risks facing our family?

What are other risks still concerning our family?

For which of these risks do we not have a clear plan in place?

Solutions

With what knowledgeable person have we, recently, discussed potential plans for meeting the risks facing our family?

Where are these plans written down? Are they easily accessible to others outside our household?

Have others, outside our immediate household, been told our wishes in writing?

Implementation

Looking at these plans, do you feel that any competent adult could implement them?

What steps need to be taken to make these plans as simple as possible to be implemented?

What needs to be implemented NOW by our family in preparation for these scenarios?

With what knowledgeable persons will we have to meet to make this happen?

Image Copyright 2015 Lightstock, LLC and is licensed by Dignity Group, Inc. and is used with permission. Photo is for illustrative purposes only. Any person depicted in the photo, if any, is a model.

Preparing for Shattered Expectations

MORE AND MORE EACH DAY, WE ARE BECOMING ACCUSTOMED TO GETTING WHAT WE WANT, WHEN WE WANT IT AT LEAST WHEN SPENDING MONEY IS CONCERNED. IF WE CAN BUY IT, ITS MOST LIKELY OUT THERE FOR A PRICE. WHEN ACCESSING SERVICES FOR OUR FAMILY, WE CAN’T SIMPLY ORDER WHAT WE WANT OFF A MENU.

Over the past decade or so, I’ve sat with hundreds of families attempting to make the best of the hand that life has dealt them. For all intents and purposes, I understand what they are going through because I’ve either gone through it myself or have stood by other families going through similar situations. As many of my friends know, I don’t believe in many absolutes: life is highly unpredictable. We do what we can do with that unpredictability.

However, of the few things I know for sure, I know without any doubt that the bureaucracy relating to accessing services for one’s family is often a surprise for most families. In a culture where so much of what we want is out there for the buying, there are many surprises that the system has in store for most families. Simply put, most families simply do not have the level of expertise in the area of services, trusts, benefits, etc. to understand what is ahead of them. So, when they begin their quests to assist their families, they are often surprised by what they find and the difficulty of searching.

Here are three bureaucratic surprises that you may wish to consider when attempting to access services and benefits for your family:

Bureaucratic Barrier #1: The System is Reactive, Not Proactive

The day after my son was born, it’s not like a FedEx package was delivered on my doorstep the next day with a letter saying, Congratulations. Now, here are the steps you should take to make the best life for this little guy. Like many families, my family and I experienced much confusion and were subject to much misinformation and disinformation (aka mythinformation) out there coming at us. Surprisingly enough, the system did not contact us about benefits. In fact, many were urging us to give him up for foster care or adoption. We had to go searching ourselves for what our family needed. We had to take the first steps and, more often than not, we had to take many, many more steps ourselves after that to keep the process moving.

Bureaucratic Barrier #2: No Understandable Menu

Again, considering the consumer mindset that so many of us have concerning services for our family, wed expect for there to be a menu of services presented to us. What does the county offer? What does the federal government offer? What does the city and local government offer? All things considered, especially in this age of technology, wed expect that there would be a concise means by which the system would inform us about the benefits to which we may be entitled. However, that’s simply not the case. More often than not, it’s not until we find others that have accessed such services before that we are even aware these exist at all. We need to find those that have walked through the process before. In our case, we plugged into Regional Center and were handed a huge book a menu that we did not understand.

Bureaucratic Barrier #3: Guides Are Not Simply Provided

They’re not! While you may find that there are many helpful individuals within the various agencies with which your family will communicate, it’s rare that a bona fide, all-inclusive guide will be provided for you. Often, those other people with which you will communicate will have a narrow expertise relating to the agency for which they work they may see things with a one-size-fits-all mindset. To find a guide that understands how the agencies function alongside one another (as apposed to simply understanding how one agency functions), you will often need to seek such a person or agency out. You’re looking for help in coordination and integration someone that understands the dynamics of your situation. Paper does not remove personalization!

In the end, remember that although there are potentially many frustrations ahead, the vast majority of agencies are filled with helpful individuals that share many of your goals. Consider who can guide you through the process of working with such agencies and building an overall strategy for your family. Look for their individual expertise. Consider the community of people around you and their respective fields. What expertise is available to you today?

Image Copyright 2015 Lightstock, LLC and is licensed by Dignity Group, Inc. and is used with permission. Photo is for illustrative purposes only. Any person depicted in the photo, if any, is a model.

Pull Up the Hearse and Let Them Smell the Flowers

HAVING WORKED WITH HUNDREDS OF FAMILIES, I KNOW THAT MOST INDIVIDUALS WANT TO PREPARE AND PROVIDE FOR THEIR FAMILIES THE BEST THEY CAN. HOWEVER, ITS OFTEN THE UNEXPECTED THAT FAMILIES ARE SOMETIMES RELUCTANT TO PLAN FOR. SADLY, THIS RELUCTANCE RELATES TO WHAT IS NEARLY GUARANTEED: LIFE RARELY GOES HOW WE PLAN.

My life is a testament to (I hope) many things. One of the many legacies that I hope to leave behind is not an easy one for me to claim however, needless to say, this one legacy I own because of my experience. Simply put, my life is in part a testament to the notion that life does not go always as we plan. As someone that has worked with special needs families for a number of decades, not only do I have my own experience as my guide, but I have the collective wisdom of hundreds of other families as well. Many of them would agree: life does not always go as we plan.

Why, then, are so many families reluctant to engage in end-of-life planning in this same fashion? The other day, I was speaking with a young man that is a friend of Dignity Group. He is having his third child this coming August. He’s in his early thirties and he’s quite ambitious. He thinks he has his whole life (and potentially the lives of his children) mapped out for him. Many of us that have children ourselves can look at such a young man with an experienced grin and say, This guy will learn the hard way that things don’t always go as planned! One of the facts of life is that we are not in control of everything. This is a hard message to deliver to others though, isn’t it? Needless to say, we nearly always want the best for ourselves and those we love.

Quite similarly, are we being overly optimistic about the rest of our life (and the lives of our family members)? While we may be accepting that death and dying is coming, do we have a tidy, clean idea about when and how that is going to happen? Are we ready for a situation in which our plan may come crumbling apart? Are we ready for the disruption and chaos? What if the planned caregiver gets sick? This is not a comfortable subject to consider.

What if you or your spouse needs special care in the years ahead? How does that change the existing picture of your plan for you and the rest of your family? All too often, it’s the parents and guardians of special needs family member that need care themselves. Who is going to take care of you if such a thing were to occur?

What happens when the operational manager of your family is incapacitated? Are you (and a long list of others) prepared to take up that role in such an eventuality?

What does a day in the life look like for your family? Who plays what roles within that dance we call a day? Who is prepared to take up each of those roles when an unpredicted circumstance arises? Who are the backup persons for those backup persons?

Consider, what do we believe is going to happen in the future? What happens when something else happens entirely?

It’s up to you to think about these difficult considerations, because if you don’t, who will?

Image Copyright 2015 Lightstock, LLC and is licensed by Dignity Group, Inc. and is used with permission. Photo is for illustrative purposes only. Any person depicted in the photo, if any, is a model.

How to begin to prepare for unknown tomorrows

MY BIGGEST RECOMMENDATION (IF I WERE TO MAKE ONE) WOULD BE TO MEET WITH US SO WE CAN DEVISE A PLAN FOR THOSE UNKNOWN TOMORROWS AHEAD. HOWEVER, IF YOU ARE TOO FAR AWAY – OR SIMPLY DONT WANT TO SEE MY SMILING FACE – HERE ARE SOME STEPS YOU COULD TAKE.

Everyone has a plan for the future until life happens. I’ve learned many lessons in my life. Some of these lessons have come with a great deal of pain pain that made me stronger. The gift (among many other gifts) that these painful situations created was something that rarely can be purchased in a store or found in a book (or even an internet article). This gift is perspective.

If I’ve learned one thing from my perspective as a father to my son, husband to my wife, and supporter of hundreds of special needs families, it is this:

Life does not always go how we expect.

There was a time where I was trying so hard to be strong amidst all the change that was happening (for many years in a row) around me. Over time, I learned that being strong has much less to do with standing like a stone wall; being strong sometimes means being flexible allowing oneself to go from tears to hysterical laugher in sixty seconds.

Strength can sometimes be shown by being able, willing, and ready to roll with what life gives us. I’m not the expert on that but I have a bit of experience.

Seriously though, I do hope that you’ll come into my office so we can talk about you and your family. However, if for some reason that is not in the cards for us at this time, I’ve found these basic steps to be of some value to families. Don’t use these as the end-all to help your family plan for the unknown future I simply hope this will be a starting point.

Step One: Gather Some Family History

Do you know your spouses birth date (including year)? How about those of their parents? Its questions like these that can sometimes create some amusing (and some not amusing) family arguments. There is so much information about one’s family that could be useful for successive caregivers for your special needs family member.

Create a single piece of paper and list his or her parents and grandparents. Include full names (and maiden names where appropriate), birth dates, addresses, phone numbers, and medical issues (including, if appropriate, the cause of death). Don’t forget to include information about siblings as well. Consider writing some basic information about best friends, etc.

Step Two: Write a Daily Routine

Where is the most important information located?

You’ve probably been living your life with your special needs family member for some time now. What are the daily routines? When do they rise in the morning? How do they rise? What self-care steps are taken throughout the day? Are these self-managed?

Consider keeping a pad of paper with you for one full day, writing down all that is done within the average days routine. You may be surprised to see all that goes into a single day, or maybe you won’t. J

Step Three: Write a Letter of Love

What are your wishes for your special needs family member? Do you feel that any stranger could walk in and follow those wishes without you present? Consider writing a short letter explaining your hopes and dreams for your family member. Express your wishes in writing so that others could benefit from this in the future.

Summary

The above should not be taken as a comprehensive, end-all plan for your special needs family member. Truly, speaking with someone who has experience working with families like yours is best. Consider making an appointment with us.

Image Copyright 2015 Lightstock, LLC and is licensed by Dignity Group, Inc. and is used with permission. Photo is for illustrative purposes only. Any person depicted in the photo, if any, is a model.