The Cost of Caregiving

Special Needs Trusts

Special needs trusts supplement basic support provided by government programs like Medicaid and Supplemental Security Income (SSI). Special needs trusts pay for comforts and luxuries that could not be paid for by public assistance funds. These funds are generally available for people prior to turning 65.

Special needs trusts allow disabled people to use savings placed in the trust to supplement government benefits which fall short of actual needs. Special Needs Trusts can also pay for home and vehicle maintenance vacations, a computer, electronic equipment, educational expenses, and even ongoing monthly bills such as phone, cable, and internet services.  They can also pay for supplemental care that is not provided by Medicaid such as therapy, and the differential between shared and private room settings.

Money from these funds cannot be used to pay for food and shelter without affecting income levels that is, they will be treated as income thus affecting eligibility for benefits. To preserve eligibility for Medicaid and SSI, money from the trust generally will not go directly to the individual but will go directly to the person or organization that furnished the services. Upon the death of the benefitted party, any remaining assets generally go to the government to pay back for money paid to the person with special needs.

Pooled trusts, which are similar, may be used by any age. These trusts are often administered by not for profit agencies and money which is not used is often able to be used by others within the pool; thus it will not be forfeited to the government. Florida has the State of Florida Public Guardianship Pooled Special Needs Trust. This organization along with The Foundation for Indigent Guardianship, Inc., (FIG) is a not-for-profit created by the Florida Legislature. To enroll in this trust or get further information you may call (877) 766-5331.

As with any legal matters, always consult with a qualified attorney who is familiar with trusts, special needs trusts, and pooled trusts.

AARP Study: The Cost of Caregiving

The nation’s unpaid caregiving workforce provided an estimated $350 billion in services last year – topping the Medicare bill of $342 billion the government spent on community-based and long-term care programs, according to a study released by the AARP.

The peculiar part of the equation is that family caregivers are saving the government money by keeping their loved ones home as long as possible.

The average price of full-time, weekday adult day-care for a year is about $15,000, according to figures from Share the Care, a Central Florida non-profit that provides respite care and crisis care for the elderly. About half of caregivers spend an average of $200 a month to support a friend or relative, the June, 2007 study found. The average annual cost for a semiprivate room in a nursing home is nearly $67,000, according to the MetLife Mature Market Institute reports.

The study by the non-profit organization that represents people 50 and older calls for better support for family caregivers. It requests an increase in respite programs, tax credits for caregivers to help delay or prevent costly nursing home care and reduce pressure on both Medicaid and Medicare budgets.

The estimated 44 million American family caregivers are paying both financially and emotionally. Those that care for the elderly, sick and disabled experience decreased salaries, loss of health benefits, retirement insecurity, legal quandaries, declining health, depression and burn-out. About 23% of those surveyed said caregiving was a financial hardship.

The AARP found that nearly one-fifth of all American workers are caregivers. Most are women who are employed full or part-time and they frequently are forced to take off work or resign to care for loved ones. Unpaid family caregivers are providing an average of 21 hours of care a week.

A shift away from institutionalized care is growing as Baby Boomers worried about cost and the loss of their parent’s independence are using nursing homes as a last resort. The percentage of people over 75 in nursing homes fell from 9.6% in 1985 to 6.4% in 2004, according to the AARP Public Policy Institute.

There is a great inequity in the types of respite provided to caregivers throughout the United States. California’s Caregiver Resource Center allows caregivers to choose from a variety of respite services and the program is not based on the recipient’s income level. But in Florida income levels are evaluated for most respite services.

“Caregivers are the unsung heroes of long-term care in our state,” said Florida’s AARP Director Lori Parham. “While many are unaware of the care they provide, caregivers’ contributions can delay or even prevent more costly nursing home care.”

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