Governor Cuomo’s Medicaid Redesign Team’s proposed Medicaid cuts will put thousands of seniors, people with disabilities, and even children at risk. The cuts will deprive them of life-saving and medically necessary long-term care.
Last month, who could forget the story of the elderly woman with dementia walking outside on her own in New York City, only to freeze to death? The sad truth behind this story? She needed more care that was denied by her MLTC (managed long-term care) plan. Now, during the coronavirus pandemic, those most at risk (seniors and others with compromised health) will have their health played as a game of Russian roulette.
The good news is that it’s not too late to take action, you can learn how here. But we have to act NOW.
Meet the people below who would be significantly harmed by these cuts:
Eliminating “spousal refusal” or “parental refusal” for children with severe disabilities harms REAL PEOPLE, like:
A CANCER SURVIVOR. Cristina H, age 66, Lower East Side, Manhattan, could not return to her work as a special education teacher after five rounds of surgery for cervical cancer in the 1990’s. Her Social Security is $1735 per /month and her husband, a veteran, receives $2400/ per month. More than half of his income pays spousal support to his ex-wife, which is not deductible by Medicaid. Their rent of $1440/month and living expenses eat up the rest of their income. With spousal refusal, Cathy qualifies for the Medicare Savings Program, which pays her Part B premium, saving $144.60 per month, and qualifies her for Extra Help, which reduces her prescription costs from $1,531/year to o $150/ per year. This was even more vital before she turned 65, when she was not eligible for the NYS EPIC prescription subsidy program.
A DEVOTED HUSBAND AND HIS AILING WIFE. Dorothy and Anthony – Hicksville, Nassau County – Dorothy, now 95, needed home care 2 years ago because her husband Anthony, now 94, could no longer care for her 24/7. She is bed-bound, with advanced dementia, incontinent and difficulty swallowing.Their combined assets of $45,000 were within the spousal impoverishment resource limit of $75,000 but when first applying for Medicaid, only $23,100 in assets are allowed for a couple. Anthony also used spousal refusal for his income. Their combined Social Security was $1941/month, plus he had drawn $15,000 from his annuity to pay property taxes of $6,277 and other bills, which skewed his income to appear higher that year for the Medicaid application. Without spousal refusal for both income and assets, Dorothy would have been denied Medicaid, even though once enrolled in an MLTC, Anthony’s income and assets were within the spousal impoverishment limits.
CHILDREN WITH COMPLICATED ILLNESSES, TOO. Serena, age 9, East Elmhurst, Queens.
The NYU Rusk Institute referred this Latino family when their only child’s SSI was discontinued when her father obtained a better job. Serena is quadriplegic since having Guillain Barre, is on a ventilator and has a tracheostomy that requires suctioning. She has CDPAP care through a mainstream Medicaid managed care plan. The father’s income of around $54,000/year (around 250% FPL) is too high for the child to qualify for MAGI Medicaid through the Affordable Care Act, but is far from enough for the family to pay the cost of care the child needs. She can keep Medicaid if her father uses “parental refusal.” This will be necessary only temporarily – as she is likely eligible to apply for the Children’s Waiver, which will not count the parents’ income. But that could take months or longer, and in the meantime Parental Refusal ensures continuity of critical medical care and home care. Also, CDPAP services save the State money, as they are a fraction of the cost of a Private Duty Nurse that would otherwise be necessary because
REAL PEOPLE would be denied Medicaid if a 5-year lookback is imposed on Home and Community Based Care, people like:
A WOMAN COURAGEOUSLY BATTLING PARKINSON’S DISEASE. Meg was diagnosed with Parkinson’s disease in 1999, when she was just 43. Over the years her symptoms worsened, and eventually she could not continue to live independently without home care. She spent down her savings $40,000 per year for private home care. By October 2017 she had exhausted all but $50,000 in stocks, which she transferred along with her co-op apartment in Brooklyn into a trust. She then applied for Medicaid and enrolled in MLTC. Her condition continued to progress, and as is typical, the Parkinson’s meds wear off and symptoms re-emerge or worsen unpredictably, so she needed an increase to 24-hour split shift home care. During the months it took for the plan to increase her hours, she used the transferred funds to supplement her MLTC hours with private care. Had there been a transfer penalty, she would have been denied Medicaid and forced to spend down her excess assets, making them unavailable to supplement her needs later when she urgently needed them. That would likely have landed her in the hospital or a nursing home.
A MOTHER WITH DEMENTIA. Amy was 93 with dementia when her daughter died of cancer and left her $200,000. Shortly after her daughter’s passing, Amy fell at home, was hospitalized and then, while in sub-acute rehab, her apartment flooded. Unable to return to her wrecked apartment, Amy’s surviving children moved her into an Assisted Living Facility in the Bronx which charged $5000 per month, which ordinarily no one in the family could afford. Amy had transferred her deceased daughter’s $200,000 to her son, who has used the funds to pay for the facility for the last 3 years. Amy applied for Medicaid home care to meet her extensive needs as her dementia has progressed, assistance which the assisted living facility does not provide. Had there been a lookback when Amy applied for Medicaid, she would have had to leave the assisted living and go to a nursing home. She is now nearly age 96 and still well cared for in the assisted living with home care.
REAL PEOPLE would be denied Home Care if Eligibility requires a “Limited Need” for assistance with more than two Activities of Daily Living (ADLs), including:
A TRAUMA SURVIVOR. KB, age 45 – Erie County – KB has a seizure disorder and frontal lobe and executive function deficit, caused by a swimming accident, when a boat did not see her and she was pinned to rocks. She has 20 hours/week of Consumer Directed Personal Assistance, for which her mother is the main personal assistant. While her slow gait is mostly steady, she needs supervision because of frequent dizziness from a cerebral spinal fluid leak that drains through her ears and nose. Other symptoms lead to forgetfulness and constant headaches, which have led her to leave her stove on after cooking, forget her medications, fall in the shower, and more. Her needs are primarily for supervision, oversight and cuing for all household tasks, meal preparation and shopping, managing medication, bathing, dressing and personal hygiene, toileting, and taking transportation to medical appointments. She is easily fatigued and has to take frequent rest periods during activities. Without the approval of CDPAP for supervision and cuing, KB would be at severe risk of harm.
A GRANDMOTHER BATTLING DEMENTIA AND SCHIZOPHRENIA. Nita A, a 69 year-old Latinx woman living in the Bronx – has dementia, schizophrenia, diabetes, and incontinence. She was going to her Senior Center during the day and MLTC approved an Aide for the evening and nights to assist her with her Activities of Daily Living (ADLs). After being hospitalized after falling at the Senior Center, her family realized she was not safe at the senior center without an aide’s assistance, and asked the MLTC plan to increase her hours to 24 hour care. The plan denied the request, claiming she needed only “safety monitoring” not assistance with ADLs. Due to her cognitive impairment, Nita must be reminded to use her walker and to perform proper hygiene after toileting, and needs “contact guarding” assistance when she walks –someone hovering close by to give support as needed. Nita ended up back in the hospital and is now in a Nursing Home. Her NYLAG advocate just won her fair hearing directing the MLTC plan to increase her hours so that she can be discharged home. If the law is changed to restrict eligibility to those needing physical assistance, Nita would be forced to remain in the nursing home. “Cueing and prompting” assistance with ADLs is just as crucial as physical assistance to prevent injury.
Don’t Require REAL PEOPLE, who qualify for home care, to justify their right to live in the community rather than be forced into nursing homes, especially:
ISOLATED SENIOR WITH DEMENTIA. Eileen, age 83, – Baldwin NY – Eileen, who lives alone and has severe dementia, has been hospitalized multiple times in the past few years — in 2016 for a broken pelvis, and in 2017 due to frostbite after leaving her home, becoming lost for hours in frigid weather. In August 2018, she was finally ready for discharge home from a rehabilitation facility after the frostbite injury. Upon discharge, her MLTC plan authorized only 7 hours/day of home care, which her family voluntarily supplemented by paying for additional care, at financial hardship to them. A month later, an appeal was successful requiring the MLTC to increase home care to 24/7. She needs to be reminded to use her walker when she impulsively gets up to walk at unexpected times, as is characteristic of the disease. She requires prompting and cueing to remind her how to use toilet paper (instead of stuffing it into her clothing), and to wash her hands after toileting. If only the need for “limited” and not “supervisory” assistance counted when assessing if the consumer has two ADL needs, she would be denied home care and forced to remain in a nursing home. If “enhanced utilization review” is used, an assessor might decide she cannot “safely” live at home, and force her into a nursing home, even though with such services she is living successfully in the community.
A WOMAN MANAGING MULTIPLE CHRONIC ILLNESSES. Diane is confined to her home most of the time due to ambulatory issues and multiple chronic illnesses. This is where she wants to live. She has both Medicare and Medicaid and is enrolled in Managed Long-Term Care. She is approved for a home health care worker 12hours/day: they shop, do laundry, clean her apartment, help with bathing, and make meals. If she no longer could qualify for Medicaid home services, her only option would be a nursing home. She was a certified long-term care ombudsman and she says the conditions in nursing homes are horrific. She will not go and says she would rather die in her home do to neglect than go to a nursing home.
Any of the same people hurt by the proposal to require two ADLs for home care could be found on “utilization review” to be unable to “safely” live at home.
See more examples of real people who will be hurt around New York State here.
Ready to take action to help stop Medicaid cuts that will hurt the REAL PEOPLE above? Visit nylag.org/MedicaidCuts to learn how.