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It’s not the disability that defines you; its how you deal with the challenges the disability presents you with.

Jim Abbott

Estate Planning

Your estate is the sum total of your property and possessions, also referred to as your assets. They include investments, furniture, household items, real estate, jewelry, and any other items of value. Estate planning involves how you want those items distributed after your death, as well as any action you’d like to occur at that time, such as a specific level of care for your child with special needs. 

Estate planning also involves protecting your ability to make wise decisions for yourself and your family while you are still alive to make them. Going through the estate planning process may be awkward and uncomfortable. It is hard to fast-forward though your life and plan for a time when you will no longer be here.

Why Estate Planning is So Important

The crush of day-to-day activities in caring for your family may make estate planning seem like one of those things you know you need to do but will get to later. Think again before putting it off for too long. :

  • If you were to suddenly become unable to care for your child with special needs, who could step in and care for your child the way you do?
  • If your savings had to be spent on your own sudden illness, how would that affect the long-term financial well-being of your child?
  • What if you weren’t able to prevent someone from naming your child as a beneficiary of an investment (rather than your child’s special needs trust), potentially disqualifying your child from government benefits?

The steps you take for estate planning will help you find answers to the question “Who will take care of my child when I can’t?”

What You Do When you Make an Estate Plan

As you’re about to see, making an estate plan involves doing several things. The end result from all this planning is protection of:

  • Your child’s long-term ability to receive important government benefits.
  • Your ability to make important decisions about the future for you, your family, and your child with special needs.
  • The way your estate—your property and possessions—is distributed among your family members in ways that provide them with the greatest benefits.

 

The majority of your work in estate planning is preparing legal documents that will provide the protections noted above. You’ll also select the people who will help you prepare those documents and carry out (execute) the plans you’ve stated in them.

Steps You’ll Take to Create an Estate Plan

The types of estate planning documents you’ll create and people you’ll need to work with in creating them are listed below. The order in which they are listed is a mere suggestion. The lawyer you select to help you create the special needs trust will guide you through these steps.

 Step

Documentation

People

 Write a Letter of Intent

x

 

 Select a Special Needs Trust Lawyer

 

x

 Select a Trustee for the Special Needs Trust

 

x

 Prepare a Special Needs Trust

x

 

 Select a Guardian

 

x

 Prepare Guardianship Papers

 x

 

 Prepare a Living Will

 x

 

 Select a Trustee for Your Will

 

 x

 Prepare a Will 

 x

 

 Select a Power of Attorney

 

 x

 Prepare Durable Power of Attorney Papers
(for financial decisions)

 x

 

 Prepare a Health Care Proxy (for medical decisions;
 also known as "health care surrogate" or "alternate decision maker")

 x

 

What You Do When you Make an Estate Plan, Part 2

Here are descriptions of the elements that make up your estate plan.

Letter of Intent

This document becomes part of the special needs trust. It is not a legal document. You write it to the person who will care for your child when you are unable to or after your death. Its purpose is to explain in detail the care you lovingly give now to your child so the caregiver can later walk in your shoes as best as possible. Since the nature of your child’s care changes over the years, you need to update your letter of intent each year.

What to Include in the Letter of Intent

In a way this letter is the story of your child’s life. It covers the range of care you provide your child day after day: personal (includes emotional, intellectual, spiritual), medical, financial, educational, career, and legal. Here are some categories to think about as a way to get you started in writing your letter of intent.

Personal

  • Name, date of birth, social insurance number, and address (if different than your own)
  • Your child’s abilities and talents.
  • The things that make your child happy or sad
  • What causes difficult behaviour and how to correct it
  • The people your child loves.
  • The people who love and care for
    your child the most.
  • Your child’s dreams and hopes for the future.
  • Your dreams and hopes for your child’s future.
  • A detailed description of how you care for your child’s emotional and spiritual health 

 

Health & Medical

A detailed description of:

     • Your child’s disability.
     • How you care for your child’s
     physical health.
     • Your child’s mental health care needs.

A list of:

     • Medications your child takes and contact information for the pharmacy you work with.
     • Your child’s doctors, specialists,
     and other health care providers
     and their contact information.

 The treatments your child needs.

Lab, x-ray, MRI, etc. results.

Your child’s vital information: weight, blood type, blood pressure.

The types of health care plans that cover your child’s medical expenses.

Assistive technology used now and anticipated to use in the future.

Financial

  • Information on your child’s government benefits that affect his or her financial well-being.
  • Your financial advisor or trusted friend
    who handles your child’s financial matters.
  • Professionals who help handle your child’s 
    affairs: financial advisor, lawyer, trustee,
     power of attorney, accountant.
  • The aspects of your estate plan that involve your child.
  • A vision of your child’s financial care

  

Educational

  • Academic strengths and weaknesses.
  • Details about your child’s Individual Education Plan (IEP) and the team responsible for implementing it.
  • The level of your child’s involvement in developing the IEP.
  • How you encourage your child’s progress through school.
  • Details on getting to and from school and after-school activities.
  • Classmates your child really likes, or not.
  • Teachers your child really likes, or not.
  • What about school gets your child excited, or frustrated.
  • Details about college plans on all levels: planning for college, funding it, and academic interests.

Career

  • Your child’s career aspirations or dreams on 

  • what he or she wants to be upon “growing up.”

  • How far along your child is in meeting these career goals 

  • Challenges to be met in getting to  and from work

  • On-the-job challenges.

  • Who your child consults for career advice

 

Legal

Any legal paperwork that is not part of the categories above.

 

 


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