Hugh was an 83-year old Korean war veteran and active American Legion member. He was proud to be a five-year pancreatic cancer survivor. He lived alone, and drove a station wagon his daughter Anna affectionately called “the admiral’s barge.” Arthritic pain and unsuccessful knee replacement surgery made it difficult for Hugh to walk. One day he fell in his apartment and broke a vertebrae (bone) in his neck.

After discharge from the hospital, the Medicare Home Health Care Benefit briefly provided a visiting nurse, physical therapy, and home health care services. After bouncing back remarkably well from this serious injury, a routine follow-up visit with his oncologist (cancer doctor), found that his cancer had returned. Hugh decided that he wanted the chemotherapy his doctor said could hold off the spread of the cancer.

Hugh seemed to tolerate the chemo fairly well at first. However, when the cancer returned to his pancreas, it made him diabetic and he had great difficulty adjusting to a diabetic diet and handling his insulin injections. It was clear that he could not maintain his independence at home without help, so Anna took a leave of absence from work to care for him.

Hugh applied for Medicaid and Medicaid Managed Long-Term Care ¹ services. When it turned out that he had more income than was permitted under Medicaid, Anna helped him get a supplemental needs trust account ² (or pooled trust).

For Medicaid purposes, income deposited in an approved pooled trust is exempt income. By depositing the portion of his income that brought him over the Medicaid income limit, Hugh was not required to pay his “surplus” income toward his long-term care services. The trust paid his rent, so it would not have to be paid out of the meager income allowed by Medicaid. This left him enough money to make ends meet each month.

Once Hugh was enrolled in Medicaid, he took advantage of the Consumer Directed Personal Assistance Program (CDPAP) ³ offered by his Medicaid Managed Long-Term Care to pay his daughter as his home care worker. Because she was a family member, she could administer Hugh’s insulin injections and check his blood sugar, something a home care worker from an agency would not have been allowed to do. Although still very much a labor of love, Hugh’s daughter received a salary through his LTMC plan for providing care for her father. This compensated to some extent for the lost income from her regular job.

New York State has several support programs available for individuals (primarily on Medicaid), who require long-term care, including the following:

¹ Managed Long-Term Care (MLTC):

MLTC is a system that streamlines the delivery of long-term care services to people who are chronically ill or disabled, and who wish to stay in their homes and communities. These services, such as home care or adult day care, are provided through managed long-term care plans that are approved by the New York State Department of Health. The application process can be complicated, but all the services an enrolled member is entitled to can be received through the one MLTC plan the member has chosen. For further details, call 1-888-401-6582 or visit the MLTC website.

² Supplemental Needs Trust Account (or Pooled Trust):

A Pooled Trust is a legal instrument managed by a non-for-profit organization designed to aid people with disabilities by sheltering their income so they might qualify for Medical Assistance. Addition information available here.

³ Consumer Directed Personal Assistance Program (CDPAP):

This Medicaid program provides services to chronically ill or physically disabled individuals who have a medical need for help with Activities of Daily Living (ADL). It allows choice in hiring the aid, including hiring a family member. More details available here.

You can receive initial advice about all of these services and tools from the Westchester County Department of Social Services and other Westchester County offices offering help to veterans and the disabled.

If you are willing to pay for consultation, you can speak to a geriatric care manager or a specialist in Medicaid management.