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Q: Our child is on the NYS Medicaid Waiver and has assets in his/her name. What should we do?


A: There are different strategies for every situation but simply transferring assets from a child to another person can lead to ineligibility for Supplemental Security Income and Medicaid benefits. Scheduling an introductory meeting before transferring funds could potentially prevent a disqualification. Prior to transferring any assets you should consult your personal tax advisor and attorney who is knowledgeable in Special Needs Planning.


Q: I already have a special needs trust. What additional planning do I need to do?


A: While having a Special Needs Trust is an important part of planning, it is not in and of itself a plan. A family needs to examine what the trust would be providing (supplemental housing, supplemental medical care, clothing, gaps in caregiver support, etc.), and if this support can be provided for a lifetime.


Q: How can I plan for my child when it is unclear how much support they will need in the future?


A: While the future for any child is uncertain, having a strong financial foundation can allow for more options in the future. For example beginning a savings plan, speaking with family about their legacy planning, buying insurance, establishing a will are all examples that can be taken at any age.


Q: My spouse and I are separated. Does this change how we do our planning?


A: Child support payments can impact certain government benefits if not structured properly. If parents are not able to communicate effectively benefits and care can be compromised. Furthermore, remarriage can complicate how assets pass between parent and child. In some cases consulting with an advisor in addition to a divorce attorney or mediator who is familiar with planning for a person with a disability could be helpful.


Q: What if I already work with an advisor?


A: Our goal is to help our clients plan for their child with a disability. Most of our clients have at least one other advisor that has helped them in areas such as banking, real estate, taxes, legal work, investments or insurance. Partnering with your existing advisors is an integral part of our planning process.


Q: Are you a non-for-profit or for-profit company?

A: While we partner with many local and national non-for-profit companies to provide education, the Upstate Special Needs Planning team is a for-profit entity.

Q: What types of disabilities does your group work with?

A: We can work with a family three different ways:


  • 1.Our team can engage a family on a fee-for-service basis: we complete a Fee Based Plan in which we develop a comprehensive or specific plan that could then be used with other advisors for implementation.
  • 2.As licensed insurance agents and registered representatives offering securities (put in disclosure) we have the ability to help a family execute a plan and purchase the appropriate savings, insurance or investment product to secure their child’s financial future.
  • 3.Through our relationship with local trust companies our firm can serve as a corporate trustee or co-trustee and provide services such as investment management, bill pay, tax returns and many other trust based services


Q: Are you a non-for-profit or for-profit company?


A: While we partner with many local and national non-for-profit companies to provide education, the Upstate Special Needs Planning team is a for-profit entity.


Q: What types of disabilities does your group work with?


A: Our clients have family members living with a Developmental Disability, Mental Illness or Traumatic Brain Injury


Proper life care planning happens at different stages.

Erica & John

Erica & John have a 13 year old son named Tom with developmental delays. Most services such as occupational therapy, physical therapy & speech are being provided in a school based setting. At this point, Tom may not be eligible for Home/Community based services Medicaid Waiver, which would allow Tom to receive additional services through a local agency.

We helped them answer the following questions:

  • Should we save for college if my child may not attend?
  • What basic things should we consider to get my family on the right path financially?
  • Are there any specific tax benefits we may qualify for, but are not aware of?
  • If grandparents want to help financially how should we handle it?
  • How do we save for our own retirement as well Tom?
  • How do we best structure our health insurance to cover ourselves and our child?

Jenna & Chad

Jenna & Chad have two children and aging parents they are currently caring for. Their one child Lucy, has special needs and is turning 18. At this stage, Lucy will be staying in school until age 21. Jenna & Chad are very concerned about transitioning out of the school district and into competitive employment.

We helped them answer the following questions:

  • How does Lucy apply for government benefits and what rules and regulations apply to our family?
  • Can she live independent of our family?
  • Can we afford to support Lucy throughout retirement?
  • How do we access adult services for Lucy?
  • How should we meet the needs of our aging parents and children?
  • Do we charge Lucy rent once she begins receiving services?
  • If we charge rent, does this impact us from a tax perspective?
  • What will our family do if Lucy does not get supervised employment setting?


Macy is a 65 year old with an adult son, Andrew, who has disabilities. Her child is outside of the world of adult services. The family has been able to meet Andrew's needs up to this point but Macy is worried about what will happen once she is gone.

We helped Macy answer the following questions:

  • Who will step in to provide support when I am gone?
  • Will Andrew's services continue after i am not here to advocate anymore?
  • What is the future of Medicaid in our community?
  • What will I do if my not-for-profit provider cuts benefits?
  • How do I leave money to my other children while still providing for Andrew?
  • How do I determine how much Andrew will need when I am not there?
  • What happens if I become ill and need to go into a nursing home?

    *The case examples are hypothetical examples used for illustrative purposes only. It is not representative of any specific financial strategy or combination of financial strategies.




  1. Check Beneficiary Designations-Retirement accounts, life insurance policies, and other investment accounts all have beneficiary designations. Should an SSI or Medicaid recipient receive these assets, their benefit could be jeopardized. It is good practice to review employer provided benefits in addition to private accounts to verify that the beneficiary arrangements are updated.
  2. Beware of Custodial Accounts- Placing assets in a custodial account for a child with a disability is, in effect, no different than an outright gift of the assets to the child; both actions may equally jeopardize the child’s government benefits.
  3. Communication with Family – Other family members may intend to leave assets to a child with disabilities. It is very important to communicate with these family members to avoid potential disqualification for government benefits.
  4. The Special Needs Trust- A properly drafted Special Needs Trust drafted by a competent attorney is one of the few tools, other than disinheritance, that allows money to be put aside for a person with a disability without it being considered a ‘countable asset’ offsetting government benefits such as SSI, Medicaid, vocational rehabilitation and subsidized housing.
  5. Funding a Trust- If the intent of a family is to assure that funds are available after the parents have died, it may be prudent to purchase permanent insurance on the life of the parents with the Special Needs Trust as the beneficiary. As long as the policy is not owned by the child, it cannot be deemed a “countable asset” that jeopardizes the benefits that the child is receiving.