EPISODE 6 – Springing into action with special needs trusts, Part 2 – March 15, 2022

Spring into action this month with special needs trusts! Learn what to consider when planning ahead with and for your loved one with a disability. Priorities and even the unknown are addressed as well as the letter of intent, also known as the letter of instruction, and real life examples to reference.


Hello, and welcome to today’s Vista Points podcast, “Choose Your Path”, where the Vista Points’ staff are committed to improving the quality of life for those of any age, who are living with a disability. 

Vista Points serves the community by providing professional trustee services and education about special needs trusts. The organization partners with a variety of nonprofit and corporate entities to better the lives of those living with physical, mental or intellectual disabilities.

I’m Bart, your podcast host. In previous episodes, we introduced special needs trusts, what they are, who is involved in their establishment, stories of the people and relationships involved and how special needs trusts impacted their lives.

In this episode, we continue to spring into action with special needs trusts! We’re celebrating spring because March includes World Birth Defects Day, celebrates World Tuberculosis Day, World Down Syndrome Day, National Doctor’s Day and is Brain Injury Awareness Month. These holidays bring special attention to well-deserved topics. Plus, we are springing into action with ideas and suggestions for the trustee to help his or her loved one live a better quality of life.

The last episode’s question was “Where do I begin?” This episode encourages you to think ahead. Of course, we each live in the present. After all, it is a gift! But as we know, from other areas of life, a key to true success is planning ahead. 

For example, consider the following questions.

-How will your loved one’s physical and mental health change in 5, 10, 20, 30 years or more?

-Consider how aging affects him or her, the disability he or she has, or other aspects in life.

-How will medications or physical equipment, such as wheelchairs or therapies not invented yet, impact your loved one?

-How could changing economies impact your loved one’s quality of life? With daily activities? With financial means to pay for care?

Quality of life is important to each of us. Yet we have all probably seen that today’s good quality of life can easily take a turn. Many of us experienced this during the global pandemic or a recent national economic downturn or even after a family member loses his or her job. 

What I am suggesting to each of us, to benefit his or her loved one with a disability, is to step back and look at how things are today and consider new information for the future.

Most people are doing what they think is absolutely right or are carrying out the plans already in place as well as anyone possibly could. I know I am. What I challenge each of us to do today is plan for the future. Some of it is predictable, yet the unknown can be daunting. My biggest piece of advice is to consider what your loved one will need or want, over time.

What will your loved one want to do as he or she ages? Everyone’s answers are different, and sometimes they will change from day-to-day. Give yourself the time and grace to think about these questions. Let your thoughts marinate. Your answers may change. That’s good! Keep track of all your ideas so you do not forget them when it is time to talk with professionals. For example, physical comfort and safety may be the primary focus today or this week. Yet what does that really look like? 

If your loved one’s diminishing eyesight predictably leads to blindness, what can you plan for now to make life easier later? Are there tools your loved one could use in 10 years which are not even a thought for today? Or if you have safety and comfort figured out, does your young loved one have a lifelong wish of meeting a famous person or a trip to Disney? These give the child hope and encourage him or her to live longer and happier, then afterwards provides comfort, memories and conversation which only unique, meaningful experiences can offer. All are important to the quality of life for your loved one with a disability.

I think it is safe to say we all want the best for each of our loved ones with a disability! We really do. And some can quickly check it off the list. That may feel great! With all due respect, it may be what they are capable of right now. I acknowledge that and respect them for all they are juggling. However, to really do this right, it takes time, thought and a team of professionals. Think ahead. Think through things. Consider the physical, mental, financial, spiritual and social aspects of your  loved one’s life, the future and the unknown. There is no easy answer! But I promise you will spring forward if you think ahead!

Each spring, many of us are outside in the yard or gardening. Tools are necessary, and you would not consider some activities without your tools! Similarly, a special needs trust includes a variety of tools. One is a Letter of Intent. Vista Points provides one which a family can complete and include with their trust documents. Its purpose is to allow the family to plan ahead for their family member , and it is used when the special needs trust is first established and throughout the life of the trust and loved one. 

The Special Needs Alliance defines a letter of intent as follows. “An important companion piece to a special needs trust is a “letter of intent” or “letter of instruction.” This is a document that actually ensures your trustee knows your child’s functional abilities, routines, interests, and particular likes and dislikes. In addition to describing your special child, the letter of intent identifies specific doctors, services and resources that will help your child enjoy the highest level of independence and self-reliance. The document is a valuable tool that communicates knowledge only parents may know, including specific hopes and desires for their child’s future well being, to the very people who will be caring for the child after the parents no longer are able to do so. After all, who knows a child better than a parent?

The letter of intent serves as the foundation of any comprehensive life-plan for a child with special needs. By compiling as much information as possible, parents are equipping future care providers with the knowledge and insight needed to increase the likelihood of good choices in order to maximize the child’s quality of life and avoid the need for caregivers to learn by trial and error. A child also may participate in creating the letter of intent so that his or her own wishes are acknowledged and recorded.

A well thought out letter of intent often includes a medical component and a practical piece and, at a minimum, should contain the following:

  • A family history, including where and when parents were born, raised, and married, as well as a description of siblings, grandparents, other relatives and special friends, with current contact information for all.
  • Resources that provide assistance to persons with disabilities in your child’s local area, including public agencies, churches, individuals and private organizations.
  • Residential care needs for your child, including past and present accommodations and expected future needs.
  • Educational information, including past records, current enrollment, specialty teachers, future educational goals, special interests and talents, extra-curricular activities, as well as types of educational emphasis, for example, vocational, academic or communication.
  • Employment guidance, including the work your child may enjoy, sheltered workshops, activity centers and companies that provide employment in the community which may be of interest to your child.
  • Social, behavioral and personal relationships that are important to your family and child, including relatives, special friends, teachers and care providers.
  • Social and recreational activities your child enjoys, including sports, dance, music or movies. Parents also might want to mention whether their child should have his or her own spending money.
  • A typical day in the life of your child, including his or her favorite foods, music, books, television shows and routines.
  • Medical information, including current doctors, therapists, clinics, hospitals, current medications and therapies. The parents should explain how the medications are given and for what purpose and describe medications that have not worked in the past.
  • Parents’ final expression of love, hope and desires for their child.

Parents should not be inhibited when writing a letter of intent, and a clear, conversational voice that avoids legalese is best. In addition, the document should be reviewed periodically to reflect any changes.” 

“Below is an excerpt from an actual letter of intent, published with a client’s permission, to help other families with their own drafting:

“…Bill can dress himself, but needs some help picking an appropriate outfit for the weather. Once his clothes are laid out he can dress himself. May need some help with buttons or other fasteners. He prefers pullover shirts and t-shirts rather than shirts with buttons. He prefers athletic pants that he can pull up such as track pants rather than jeans or slacks. He can put on his own socks. He struggles with tying shoes and we have switched exclusively to zip up or pull-on shoes. He is able to zip his own coat, but may need help at times. Using zippers, snaps and buttons are a continuous goal for him to work on manipulating them independently.

He needs to be reminded to brush his teeth and wipe his face, but can do these tasks independently both in the morning and at night. He hates mint toothpaste and uses the kids’ flavors. Right now he is using Kids Crest- Sparkle Fun flavor. He hates getting a lot of water on his face and needs a washcloth and wipes all over his face and then rinses with a damp cloth. He can do all this himself, but hates it and needs supervision and verbal prompts/encouragement. Bill is doing well with taking showers. It has been a long process. He can wash himself fairly well with the washcloth and can now wash his own hair. He continues to need someone checking in on him and providing verbal cues to wash and rinse his hair well. He gets upset if a lot of water goes on his face so rinsing his hair is an issue…”

Although writing a letter of intent may be an emotional experience, once the process is complete, parents may rest easier knowing they have left a detailed road map for later care providers and trustees to ensure the highest quality of life for their child and the fewest interruptions in his or her daily routine.”

Using these tools for special needs trusts is like using yard tools during the spring. The tools allow us to dig deeper, plant seeds and grow them to fruition. Similarly, thinking ahead requires you to dig deeper, plant the seeds of ideas for your loved one and team of professionals, and grow these ideas into reality with a properly executed special needs trust.

You now have the tools! It’s time to spring into action! I am ready, are you?

This concludes today’s episode of Choose Your Path, a Vista Points podcast. Subscribe now, to our YouTube channel, to stay up-to-date on the latest episodes, which go live on the 1st and 15th of every month. Or, visit the Vista Points website online at vistapoints.org. You can find all our episodes there, as well as a blog of each podcast, for you to reference. 

This podcast is one way we create awareness and provide education about special needs trusts. But, we best serve you when we hear your questions. We encourage you to ask questions or share your concerns. You can easily do this via Facebook. Direct message VistaPointsInc, that’s Vista-Points-I-N-C, or look for our Facebook page with the same name, VistaPointsInc.

As we mentioned before, you can spring into action by calling the Vista Points office at 888-422-4076. That number again is 888-422-4076.  Each of the Vista Points team wants to answer your questions and assist you in whatever way they can.

Enjoy your day with your loved one. Come back for more information on April 1st when we will discuss Sewing the Seed with ideas of how to use a special needs trust. I look forward to talking with you again.