Turning Planning Into Security

for Their Future

For families of people with disabilities, planning for the future is about more than inheritance; it’s about lifelong support, stability, and protection. That planning typically includes three key parts:

• • Legal planning (estate planning)
  • Disability planning (caregivers, benefits, and a Letter of Intent)
  • Financial planning (money needed for a full lifetime)

All three parts must work together, like a three-legged stool. Good planning helps:

• • Protect public benefits
  • Support the person with a disability
  • Make sure other family members’ needs are also met

 

Common Questions Families Ask

• Who will care for my child when I pass away?
• Does having an IEP mean my child qualifies for public benefits?
• Should my child stay in public school until age 22?
• Will my child be able to work?
• Can my child live on their own someday?
• Could my child lose SSI or Medicaid?
• Can siblings inherit money and help later?
• What happens if I become disabled?
• How do I choose a guardian or trustee?
• Will I ever be able to retire?

Cost of Living and Disability

Families with a member who has a disability often need more income. On average, these households need:

• 28% more income
• About $17,690 more per year

This helps families who have a family member with a disability reach the same standard of living as those who do not.

 

Wills and Trusts

Wills

A will explains what happens to your money and property after you die.

A will allows you to:

• • Choose who receives your assets
  • Name a guardian for minor children

Without a will:

• • The state decides how assets are shared

Important for families with disabilities:

• • Inheriting over $2,000 can cause loss of SSI, Medicaid, or DSPD
  • Wills should say assets go into a Supplemental Needs Trust

 

Living Will / Advance Health Care Directive

A Living Will explains your health care wishes.

It can:

• • Accept or refuse medical treatment
  • Name someone to make decisions for you

In Utah, this is part of the Advance Health Care Directive

 

Special Needs / Supplemental Needs Trusts

People on SSI cannot have more than $2,000 in their name.

Two helpful tools:

• • ABLE Accounts
  • Supplemental Needs Trusts

 

Third-Party Supplemental Needs Trust

Often called a “Special Needs Trust.”

Helps a person with a disability:

• • • Keep SSI, Medicaid, or Medicare
    • Access money safely

 

Important rules:

• Trust wording must be exact
• Money is not counted as personal assets
• Trust pays for extras not covered by benefits
• Cannot pay for food or housing

 

Things to know:

• No limit on how much can be added
• Income earned may be taxable
• No Medicaid payback
• Managed by someone other than the beneficiary
• May include setup and trustee fees

 

Revocable Living Trust

Created by a parent or caregiver

• • • Can be changed during their lifetime

This type of trust helps to:

• Avoid probate
• Protect privacy

Becomes irrevocable after the grantor passes away

 

Irrevocable Trust

• • Cannot be changed once created
  • Changes require trustee approval

 

Third-Party Trust

Funded by someone other than the person with a disability (Example: parent or grandparent)

• • Medicaid does not require payback

 

First-Party Trust

Funded with the person’s own money

Often used after:

• • Legal settlements
  • Inheritance received directly

Includes a Medicaid payback when the person passes away

 

Important Reminders

Always work with:

• • A qualified estate planning attorney
  • Someone experienced with Supplemental Needs Trusts

 

For most families:

• A Third-Party Supplemental Needs Trust is best

 

Keep Documents Updated

• Laws and life change over time.
• Review and update:
  • Estate documents
  • Letter of Intent
  • Care Notebook

A good habit:

• Review everything once a year, such as every January