1. THE SPECIAL NEEDS ALLIANCE
FUTURE PLANNING, TRUSTS AND OTHER CONSIDERATIONS: PARENTS WRITE THE SCRIPT
PRESENTED BY:
EDWARD V. WILCENSKI, ESQ.
THE SPECIAL NEEDS ALLIANCE

2. THE PERFECT STORM….
Three factors will drive this type of planning:
Aging of the caregiver
Continued cuts in funding and access to services
Increased scrutiny and oversight by courts and public benefit agencies

3. QUESTION: WHO STEPS IN WHEN PARENTS AND OTHER CAREGIVERS ARE GONE?
Agencies that serve the disability community
Friends and family members

4. PRIMARY OBJECTIVES OF FUTURE PLANNING FOR INDIVIDUALS WITH DISABILITIES OF ANY AGE
Preserving government benefit eligibility
Identifying and appointing agents and caregivers
Educating your advocates to carry on in your absence

5. FIRST THINGS FIRST: ADDRESSING THE SPECIAL NEEDS “STIGMA”
Many individuals with disabilities do not like the label “special needs”
This type of planning involves disabilities across the cognitive/functional spectrum
Ask the question: is my family member fully independent ? If not, then you must wrestle with these issues…

6. THE CHALLENGE OF DEFINING “CAPACITY”
Key concepts:
Legal / decision making capacity
Legal rights versus “Mom and Dad” rights
Guardianship
Advance Directives and alternatives to guardianship

7. IF YOU HAVE CAPACITY, YOU DON’T NEED A GUARDIAN…
You choose who helps you when you need it:
Power of Attorney
Health Care Proxy
Living Will

8. WHAT IS A GUARDIAN?
APPOINTED BY A COURT TO MAKE DECISIONS FOR THOSE DETERMINED TO BE UNABLE TO MAKE DECISIONS FOR THEMSELVES
IN NEW YORK THEY ARE CALLED GUARDIAN OF THE PERSON AND/OR PROPERTY
OTHER STATES MAY CALL THEM CONSERVATORS, GUARDIANS OF THE ESTATE, OR USE OTHER, SIMILAR TERMS

9. IS GUARDIANSHIP NECESSARY?
Often the most challenging decision for families
For “high functioning” developmentally disabled, this means weighing the risks and benefits:
* How much property is at issue?
* Are friends and family close by?
* How would the person react to having a court appointed guardian?

10. PRESERVING GOVERNMENT BENEFITS
Insurance type benefits versus means tested benefits
Social Security versus Supplemental Security Income
Medicare versus Medicaid
Everything else…

11. BASIC ESTATE PLANNING Who gets my stuff? When and how do they get it?
Who takes care of my minor children?
Who makes sure my plans are carried out?
Most of these questions are answered in a well-drafted Will.

12. TRUSTS…
When there are minor children or family members with disabilities, most estate plans will include a trust of some kind…
Trusts always have three components:
Grantor (Settlor /Creator /Testator)
Trustee
Beneficiary

13. TRUSTS…
Can be created during life (“living trusts”) or at death (“testamentary trusts”)
Can be revocable or irrevocable
Can provide the beneficiary with whatever rights and interests the Creator wants…

14. SPECIAL (SUPPLEMENTAL) NEEDS TRUSTS
Are usually irrevocable
Are discretionary
Are designed to provide goods and services to supplement what might otherwise be available to the beneficiary…
Be sure to find an attorney with significant, relevant experience in estate planning for individuals with disabilities and their families….

15. SPECIAL (SUPPLEMENTAL) NEEDS TRUSTS…
Third Party Supplemental Needs Trusts and the story of old Mr. Escher
First Party Supplemental Needs Trusts and why you should read articles that discuss Medicaid eligibility for the elderly
Remember the importance of planning in advance!

16. WHO CAN BE A TRUSTEE? A capable and reliable family member
A bank or financial services organization
Some not for profit organizations
Some combination thereof…

17. WHAT IS A REPRESENTATIVE PAYEE?
Appointed by the Social Security Administration
Receives SSI or Social Security payments on behalf of someone who cannot manage the funds him/herself
Files an annual report
Agencies will often serve as representative payee

18. SOME OF US WILL PLAY MULTIPLE, SEPARATE ROLES…
Just remember to keep your roles separate…..

19. WHAT CAN FAMILIES DO TO EDUCATE THEIR SUCCESSORS?
Discuss their intentions and be honest about it…
Document information that will be important for them to carry out their responsibilities…

20. SOME PLACES FOR MORE INFORMATION….
SPECIAL NEEDS ALLIANCE (
NATIONAL ALLIANCE ON MENTAL ILLNESS (
* go to the “Special Needs Estate Planning” link on home page…

21. THANK YOU FOR COMING…. JONES & WILCENSKI, PLLC 5 EMMA LANE
CLIFTON PARK, NY 12065