Support the Special Needs Trust Fairness Act


A special needs trust holds assets (usually funds) for the benefit of a disabled person without affecting any public benefits the person may receive, such as SSI or Medicaid. Those assets can then be used for the disabled person’s benefit.

Current law allows a disabled person to create a special needs trust, with his or her own funds (a “self settled” trust). However, the law restricts those who can establish such a trust to a “parent, grandparent, legal guardian of the individual, or a court.” (See 42 U.S.C. 1396p(d)(4)(a).) 

Oddly, the disabled person has no power to establish a self settled special needs trust. As a result, a disabled person — even one with full mental capacity — must petition a court to create such a trust when there is no parent, grandparent, or legal guardian.

The Special Needs Trust Fairness Act introduced into this session of the U.S. Congress (H.R. 670) would remedy that gap in the law by allowing a disabled person to establish a self settled special needs trust on the person’s own behalf.

The bill enjoys bipartisan support. A version of this bill in the last Congress passed out of the Senate Finance Committee but failed to become law.

We at Sykes Elder Law support the Special Needs Trust Fairness Act. Current law burdens disabled persons unnecessarily by requiring them to file court petitions to establish their own trusts, simply because they have no parent, grandparent, or legal guardian to do that for them. This distinction is unfair, benefits no one, and causes unnecessary work for the court system.

We urge all those who care about the disabled in our country to support the bill and to make your support known to your senators and representatives in Congress.

What is a geriatric care manager?


As our population ages, there are new services available to help families cope and make prudent decisions about an aging loved one. Caring for a senior can rapidly become complex and overwhelming. Having one person manage multiple concerns and issues can stretch health care dollars by reducing duplicative services. A geriatric care manager (GCM) can be a great resource.

The GCM coordinates care for seniors or disabled adults. They have a variety of educational backgrounds which may include social work or gerontology. They evaluate and coordinate care to assist seniors to maximize their independence while maintaining a safe environment.

Geriatric care managers can develop a comprehensive plan to make decisions about:

  • housing
  • home care services
  • medical management
  • communicating the changing needs of the senior
  • social activities
  • legal services

GCM’s can help coordinate and address:

  • bill paying
  • transportation to doctor appointments
  • home safety needs
  • compliance with medication regimens

GCM’s are invaluable when a senior has limited or no family support in the context of complicated medical conditions. These days the adult children frequently live in other cities and cannot provide the hands on support and decision making that is necessary to keep a parent safe. Sometimes family members have bitter disputes about crucial decisions that are never made until a crisis occurs.

Consider a GCM if you would like the peace of mind that can result when you know your parent has an objective and knowledgeable person whom they trust. Contact our office if you would like a referral, or to discuss any elder law issues.


Nursing home residents’ rights

Since 1987, the federal Nursing Home Reform Act has provided a number of important protections for residents of skilled nursing facilities. A few of these are:

            Freedom from restraints. The act provides prohibits the use of “physical or chemical restraints imposed for purposes of discipline or convenience and not required to treat the resident’s medical symptoms,” as well as “physical or mental abuse, corporal punishment, [and] involuntary seclusion. Restraints may be imposed only to ensure physical safety and only on a written physician’s order.

            Freedom of choice. The act ensures that residents have the right to “choose a personal attending physician, to be fully informed in advance about care and treatment, [and] to be fully informed in advance of any changes in care or treatment.”

            Room change notice. A resident has the right to notice prior to any change in the resident’s room or roommate.

            Confidentiality. The facility must keep a resident’s personal and clinical records confidential, and provide access to current records upon the request of the resident or his or her legal representative within 24 hours.

            Privacy. A resident has the “right to privacy with regard to accommodations, medical treatment, written and telephonic communications, visits, and meetings of family and of resident groups.”

            Protection of resident funds. A facility must “hold, safeguard, and account for” a resident’s personal funds, but “may not require residents to deposit their personal funds with the facility.”

            Grievances. A resident has the right “to voice grievances with respect to treatment or care … without discrimination or reprisal for voicing grievances and the right to prompt efforts by the facility to resolve grievances the resident may have, including those with respect to the behavior of other residents.

            A complete list and description of resident’s rights under the act may be found in 42 U.S.C. § 1395i-3, which you can read by clicking here.

Help available for caregivers, NBC reports

On last night’s broadcast, NBC News reported on the loneliness and isolation felt by millions of Americans who provide care to elderly relatives.

NBC spotlighted findings from a new AARP study, including the fact that 42 million Americans age 40 to 60 spend time each week caring for an older adult. Of those, 29% devote more than 40 hours a week to caregiving.

The burden on caregivers can be overwhelming at times. AARP has sponsored public service announcements to call attention to the issue, and to let caregivers know there is help available, NBC reported.

AARP provides a Caregiving Resource Center website, with links to an online support group, a place to submit questions to a panel of experts, and basic information for caregivers and their families.


Payments to caregivers found deductible, Tax Court rules

recent decision of the United States Tax Court reminds us that the some of the cost of caregiving for the chronically ill may be tax deductible, but that it is important to get the proper documentation.

It may also help if you file a tax return.

Lillian Baral suffered severe dementia and required assistance and supervision 24 hours a day, her doctor determined. Her brother arranged for caregivers to help her bathe, dress, travel to the doctor, take medications, and transfer to a wheelchair.

Although she had $94,229 in adjusted gross income for 2007, she did not file a tax return, nor did anyone file one for her. The IRS filed a substitute return for her, based on information from third parties, resulting in a tax bill of $17,681.

On her behalf, Lillian’s brother questioned the amount of the tax bill and claimed she could deduct her costs for caregiving, physicians, and supplies. In 2007, she incurred $49,580 for caregiver services, $760 for physicians’ services, and $5,566 for supplies obtained by her caregivers.

IRS rules allow a tax deduction for the medical care of a taxpayer, including “qualified long-term care services” for “a chronically ill individual.” Those services can include “maintenance or personal care services.” A deduction is allowed for the amount of such costs that exceed 7.5% of the taxpayer’s adjusted gross income.

But in this case, the IRS said Lillian had not met the requirements of showing a severe enough impairment, that the services were provided “pursuant to a plan established by a qualified health care professional,” or that the supplies were related to her care.

The Tax Court found that Lillian met the requirements to deduct her caregiver services because her doctor had certified her as being cognitively impaired and “requiring substantial supervision to protect her from threats to her health and safety.” The court also allowed deduction of her physician costs.

However, the court disallowed the deduction for supplies because no one gave the court receipts or other substantiation that they were for medical care.

Medical expense deductions for long-term care services can save thousands in taxes. But as this case shows, you must be able to prove that you have met all the requirements. For example, have a clear plan of care in writing from a licensed heath care practitioner. Keep receipts for supplies and be able to show that they relate to the taxpayer’s care.

Finally, make sure you file a tax return to claim your deduction. Lillian’s deduction may not have been questioned in the first place if it had been claimed on a properly filed return.