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Disabled son - what to do with trust?

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semantic

Member
What is the name of your state?CA

Our infant son was just diagnosed with a rare genetic disorder that requires life long care. He will never be able to handle his own financial affairs (mental retardation), and he can live a normal lifespan. We are trying to plan for his future care.

We are trying to figure out to set up a trust or foundation that will administer to his needs, without getting tangled up in SSI or SSD issues. I think we can build a foundation that can purchase a home for him, and hire caregivers administered by the board of directors.

But my parents want to start a trust for him, and their lawyer told them that he couldn't have anything in his name, because he would lose his social security benefits. Can't a trust at least pay his bills and such? Or would that be considered as income by social security? Would he lose benefits because a trust was in his name?

Is this true?

Thanks for any replies on either the foundation or trust issue.
 


candg918

Member
You need to research Special Needs Trusts. Check back on this thread; I had a good reference which I have misplaced and will post for you when I locate it.
 

seniorjudge

Senior Member
Third Party Special Needs Trusts

Purpose: The primary purpose of a Third Party Special Needs Trust is to preserve government benefits for disabled beneficiaries. Usually the benefits involved are from programs that have limits on the beneficiary's assets and income. Receipt of an inheritance will disqualify the beneficiary for future government benefits.

Government Programs: Two of the programs that are based on financial need are Supplemental Security Income (SSI) and Medi-Cal, which is the California version of the Medicaid program. Housing subsidies, also called the Section 8 program, In Home Support Services, food stamps, and utility payment assistance are also based on financial need.

However, Social Security and Medicare are not based on financial need, but are instead based on the applicant's age and earnings record.

Hypothetical Example: Suppose a couple has three adult children who will divide a $600,000 estate after both parents have died. One of the children is receiving SSI benefits due to a mental disability and has difficulty handling money. Because the child is receiving SSI benefits, the child is also eligible for Medi-Cal benefits for his continuing medical and mental problems. This child is not given large amounts of money by his family because he is likely to waste anything he is given. If the couple sets up a traditional distribution plan in their wills or trust that gives everything to their children equally, their disabled child is likely to have major financial problems. If the child outlives his parents, he will inherit approximately $200,000, which will increase his assets far above the limits set by the SSI program and by the Medi-Cal program. The child will be disqualified from those programs and will receive no further benefits. After spending his inheritance, perhaps within just a few months, the child will have no assets, and great difficulty in returning to the SSI and Medi-Cal programs.

The Special Needs Trust: Instead of leaving assets directly to the disabled adult child, the parents could establish a Third Party Special Needs Trust in their living trust or wills. This trust would not be under the control of the child, and the child would not be able to revoke it and use the assets for his own purposes. The trust would have an independent trustee and would continue for the lifetime of the child. (This is known as a "Third Party Special Needs Trust" because the beneficiary has no control over the trust. There are other types of special needs trusts that are funded with assets belonging to the beneficiary, known as Litigation Special Needs Trusts, that are not discussed here.)

A Third Party Special Needs Trust can own various assets that are used by the child, but due to the ownership by the trust, the assets are not counted as being owned by the child. The trust could also pay for services required by the beneficiary, such as telephone, education, car repairs, etc., without affecting the beneficiary's eligibility for the government programs. The trustee, however, would not make cash payments to the child because the payments would be counted as income for the beneficiary and could result in reduction or loss of benefits. The trust could also own a home for the child, thereby reducing the child's expenses for rent, although there may be some reduction in SSI benefits as a result.

Pros of Special Needs Trusts: The Third-Party Special Needs Trust has no obligation to notify the state or pay back Medi-Cal payments after the beneficiary's death because the beneficiary did not own the assets. This type of trust prevents the beneficiary from controlling the assets, but also maintains a means of helping the beneficiary with the assets held by the trust. (However, when a Litigation Special Needs Trust is used, the state must be notified when the beneficiary dies and Medi-Cal payments may have to be repaid to the state from the Litigation Special Needs Trust.)

Cons of Special Needs Trusts: When the parents' estate plan becomes irrevocable, usually through the deaths of the parents, the special needs trust also becomes irrevocable. If the beneficiary regains mental or physical capacity after that point, making changes to the trust or revoking it can be difficult, and will require court approval. Unless the beneficiary is severely disabled and has no hope of financial survival without the government programs, a special needs trust may not be the answer.
 

rmet4nzkx

Senior Member
It is very important that when you form a special needs trust that your attorney is competent to write it up so it complies with both State and Social Security regulations. Please call Protection and Advocacy Inc. Legal or advocacy questions: 1-800-776-5746 TOLL FREE Administration: 916-488-9955 or their website http://www.pai-ca.org/ They can provide you with state specific information and possible referals.

Have you been in touch with your local Regional Center to begin the process of early intervention and access to benefits?
 

semantic

Member
That was a ton of great information.

What if my daughter, who is 2 years older than my disabled son (severely for the rest of his natural life, will not be able to survive on his own or make simple decisions - Angelman Syndrome) inherits the 'estate' and therefore 'runs' the Special Needs Trust for my son?

For example, we make a will that our daughter inherits our estate; is the Trust 'part' of that estate, or totally separate? Even if it is separate, if we name her as the trustee upon our deaths, could she then manage the affairs of the Special Needs Trust for her brother?
 

seniorjudge

Senior Member
Q: What if my daughter, who is 2 years older than my disabled son (severely for the rest of his natural life, will not be able to survive on his own or make simple decisions - Angelman Syndrome) inherits the 'estate' and therefore 'runs' the Special Needs Trust for my son?

A: You should get a corporate trustee who will be around forever.


Q: For example, we make a will that our daughter inherits our estate; is the Trust 'part' of that estate, or totally separate? Even if it is separate, if we name her as the trustee upon our deaths, could she then manage the affairs of the Special Needs Trust for her brother?

A: The trust will not be part of your probate estate when you die.
 

semantic

Member
So the non-profit corp we want to set up as a foundation could potentially be the corporate trustee.....no? Run by a board of directors, they would make the decisions on the trust?
 

seniorjudge

Senior Member
Q: So the non-profit corp we want to set up as a foundation could potentially be the corporate trustee.....no? Run by a board of directors, they would make the decisions on the trust?

A: This is possible. Ask the direction of your estate planning attorney and your tax CPA.
 

semantic

Member
rmet4nzkx said:
It is very important that when you form a special needs trust that your attorney is competent to write it up so it complies with both State and Social Security regulations. Please call Protection and Advocacy Inc. Legal or advocacy questions: 1-800-776-5746 TOLL FREE Administration: 916-488-9955 or their website http://www.pai-ca.org/ They can provide you with state specific information and possible referals.

Have you been in touch with your local Regional Center to begin the process of early intervention and access to benefits?

Yes, Regional Center is already involved. Access to benefits is a slower process, but early intervention is started (pt, ot, speech). Don't know yet how to get SSI started, or CCS. Or basically what else is out there, I don't know yet. Thank you for the links.
 

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