This past Saturday, at least fifteen thousand people marched through downtown Montpelier, Vermont, in the name of women’s rights, human rights, compassion, unity, and equality. I was among the thousands who sloshed through mud puddles and climbed over snow banks, each one of us determined to stamp out hatred and bigotry.

I’m not one for crowds, especially large crowds; if you have an anxiety disorder, like PTSD, you know what I mean. But I packed my Xanax – just in case – and drove the 40 miles with my step-daughter (thank you Rachel for being there with me) from Burlington to Montpelier, waited in five-miles of backed up traffic on the interstate before making an illegal U-turn (I can’t tell you how good it felt to break the law!) so we could exit onto an alternate route leading into town, then parked a mile from the state house. From there, Rachel and I took our first steps toward the center of inclusivity: the golden-domed state house.

Montpelier may be the smallest capital in the nation, but our voices here in Vermont are far from small. Yesterday, as we marched together, thousands waved signs reading, “Yes we still can … We should all be feminists … We the people … complacency is complicity.” We sang and chanted and shouted against oppression and injustice. We spoke out loud for what is right: helping the homeless and the poor, treating with dignity women, people of color, Hispanics, Jews, Muslims, gays, LGBQTs, the young and the old. And the disabled.

I give the disabled a sentence of its own, not because I believe they’re superior to others; I do so because I know too many disabled people, mostly those who have sustained traumatic brain injuries (TBI) and are now living with chronic side-effects, such as vision difficulties, chronic anxiety, sleep disorders, and rip-roaring headaches. Due to their injuries, some find it difficult to engage in substantial gainful activity, a social security disability insurance (SSDI) term meaning your medical condition prevents you from doing more than “insignificant” work. And if your disability prevents you from working twenty hours or more a week, the typical threshold for receiving employer-based benefits, this likely outcome is this: no health insurance. With the enactment of the Affordable Care Act, though, those with disabilities had options, and they didn’t have to worry about being discriminated against for having a pre-existing condition (a TBI for instance). The ACA offered increased accessibility to community health centers, and enacted a provision that axed annual and life time limits – a godsend for people with disabilities. For those who receive SSDI and Medicare under the program’s guidelines, they are (or should I say “were?”) protected.

But it’s 2017, and winter has arrived. “He who must not be named” plans to eviscerate the ACA, with no alternative other than the ambiguous executive order he signed just hour after he was inaugurated directing federal agencies to relieve individuals, state governments, businesses, and health insurance companies from “burdens” placed on them by the ACA.

Whatever that means? In the meantime, there are nearly 50 million people in the U.S. who have a disability, and about 8.8 million who receive SSDI benefits. Though “he who must not be named” promises Medicare for All, this is sheer talk from a man who, well, likes to talk. And, of course, “he” has to deal with the Republican controlled congress. What do the millions receiving Medicare under SSDI benefits – and those sixty-five and older – have to look forward to?

I wish I had a magic wand to make it all better, but I don’t. Yet, I do have my voice. I share my voice with you, sing and chant and cheer for you, keeping in mind the words that Martin Luther King Jr. spoke in 1965: “Our lives begin to end the day we become silent about the things that matter.”

The more we speak, the louder we speak, “about the things that matter,” the closer we come together, marching forward toward human progress and shaping a world in which every single one of us matters.

 

 

 

 

 

 

 

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I like to believe that I’m too young to think about who will take care of me when I’m old and frail and can no longer prepare my own meals, bathe myself, or even tie my own shoes. But my father’s personal narrative has taught me to plan ahead: I now have an advance directive, and hope to have enough money set aside for long-term care costs, like an assisted living, or, do I dare say it? Nursing home. A place that most of us hope to avoid. We remind our loved ones, over and over, “Never, ever put me in a nursing home.”

My father spoke those exact words to me, time and again, in the years before he was diagnosed with Alzheimer’s, at age seventy-one, though he punctuated them with what might as well have been an exclamation point: “If you do, I won’t live a year.”
I wanted to guarantee my father that I would never “put” him in a nursing home. As his health care proxy (HCP), I did all I could to follow through with his documented wishes: “It’s my expressed desire not to be placed in an assisted living facility, or nursing home, or any other institutionalized living arrangement.” During the early phases of my father’s Alzheimer’s, he was able to stay at home with a paid companion a few hours a week. But as his disease progressed, he required full time care, twenty-four hours a day, seven days a week.

He didn’t have a wife to care for him. I live in Vermont with my husband, my older sister lives in California, and my younger brother and his wife have demanding jobs, with two young children in tow. None of us could have easily packed away our lives and moved in with our father; we had to hire a home care agency. But no way could the three of us afford the exorbitant cost of upwards of $14,000 a month for trained home care staff and case management services. This is when we cashed in on my father’s foresight: Because he’s a perennial over thinker, and could afford it, he had purchased long-term care insurance (LTC) – a policy that covers personal care in the home or institutional setting – years earlier. We managed, barely though, to keep my father at home for three years. Yes, the inevitable happened, and he’s been in a nursing home for a year now – a nice nursing home with attentive staff, decent food, lots of activities, a flower-bordered patio, and a pastel-painted dining room with tall windows.

But what happens to those who can’t afford the prohibitive price for long-term care insurance, or the out-of pocket costs for home care services – services typically not covered by insurance – or the fees for a nursing home? In the U.S, with the older population – people sixty-five and older – at nearly close to fifty million, which is predicted to nearly double to an eye-popping ninety eight million by 2060, I imagine those kinds of questions are being asked at a lot of dinner tables. My husband, his siblings, and I, ask one another those questions as we scramble to piece together a plan to care for his eighty-eight-year-old mother, who is blind in one eye and has dementia. Her dementia is at a stage where she doesn’t need to be in a nursing home or an assisted living facility. But she no longer drives, and needs assistance preparing some meals and doing household tasks, she is also at high risk for falling. But she doesn’t have the funds to pay for home care. That leaves her with one option left: family. For now, one of her sons, who recently resigned from his job, is living with her full-time. But that’s not sustainable, financially or emotionally, for her son. Fortunately, my husband comes from a large family, and his siblings are willing to sign up for shifts.

Here’s why having family available to help is a saving grace: Taking into account three types of care – assisted living, independent living, and memory care – the average monthly cost in the U.S. is nearly $4,000. The Northeast is the most expensive in the nation: just over $5,000 a month. The average daily cost of nursing home care runs about $250 a day for a private room, more than $90,000 a year. But nursing home care is a whole different animal from other types of elder care, and this is where it gets confusing: If you, or your loved one, need nursing home services on a temporary basis – due to an illness or injury – and you have Medicare, great, the government will pick up your tab, but, of course, only if certain requirements are met. And they’ll pay the full cost for only so long: exactly twenty days. For the next eighty days, you get to pitch in: about $130 a day. On day one hundred, Medicare is no longer an option. And they don’t pay for long-term nursing home care. If you can’t afford LTC, and you don’t have Medigap – a non-government insurance plan – and are not a veteran, that’s when you dig deep into your pockets, cash in life insurance policies, reach out to family, praying you haven’t done anything to offend them, or, to qualify for Medicaid, sell just about every last possession you own, including your house.

That’s why procrastination isn’t your best friend. Where do I start? You might ask. A Place for Mom, the largest senior living referral service in the U.S., offers tips on how to prepare for the kind of care you might need as you age. If you believe you’re immune to aging, even after reading this post, I should share with you what James Salter, author of All That Is , has to say: “Age doesn’t arrive slowly, it comes in a rush … You are the same and still the same and suddenly one morning two distinct lines, ineradicable, have appeared at the corners of your mouth.”

Since I can’t bear ending on a minor key, I’ll leave you with this: You have a voice, so don’t be afraid to use it. Speak out, share your concerns about the rising costs of long-term care, even if your voice is out of tune: As Joni Mitchell says, “The more out of tune voices the better.”

 

This above post was originally published on June 3, 2016 at Strategy Health Care

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Are you in need of an elder care agency for a loved one, but don’t know what you should be looking for? I’m here to help you get started.

A few years ago, when my father began to experience cognitive decline and difficulty with organizational and household tasks, he was diagnosed with Alzheimer’s disease. He became anxious when left alone, even for a short amount of time, so my family decided to hire a home health aide.

The agency we chose didn’t charge too much for caregivers, and they could take him out to lunch or to do errands. But personalities between my father and the few caregivers on staff didn’t mesh, so we hired a different agency about a month later. These caregivers lasted six weeks before they burned-out. After a lot of research, we found a larger agency with several caregivers and years of experience caring for people with Alzheimer’s. Because of reasons too complicated to discuss here, it took more than a year before the agency found a few caregivers that my father felt he could trust. And, in the event of illness, there was a large pool of others to fill in. The agency assigned a nurse case manager to oversee the caregivers, to trouble-shoot glitches in schedules, and to coordinate medical appointments. More than two years later, due to policy changes and poor communication from management regarding updates about my father’s condition, we fired them and hired another agency. That was about a month ago and, so far, things are working out well (I’m keeping my fingers crossed).

If you’re in search of an elder care agency, I’ve gathered a list of questions to ask whoever is in charge. But, first, it’s worth noting that private home care agencies are for-profit businesses; they’ll work hard to convince you that they’re the best ones to oversee the care of your loved one. So, before signing your name to a contract of any kind, think of the following as an interview – you do the interviewing:

1)  “Does your agency accept Medicare?”

If the services being provided are for activities of daily living – bathing, dressing, feeding – Medicare will not pay. They will only pay if skilled services like dressing changes or physical therapy are needed. Most likely you, or whoever is receiving care, will either have to pay out of pocket or use long-term care insurance, if you are fortunate enough to have a policy (see #2).

2)  Is your agency registered with the state?

Long before he was diagnosed with Alzheimer’s, my father  bought long-term care insurance, in the event he would need care for an indeterminate amount of time. His policy doesn’t cover the cost of care with agencies not registered in the state in which he lives. I didn’t know this until after we hired the second agency, which was not registered. But Long-term care polices can be costly. I recently learned that most companies no longer offer insurance because they don’t have enough funds to pay benefits; however I heard that New York Life still does.

3)  Does your agency meet federal requirements for safety and health?

4)  How long has your agency been in business and do you have experience caring for people with Alzheimer’s, etc.? What are the primary services your agency provides?

5)  How experienced are your caregivers? Can I see references?

6)  How often do you conduct performance reviews? How are your home health trained, and how do you monitor their skills? Are they licensed? How do they handle emergencies like choking or a heart attack? Are they trained in CPR?

7)  Are caregivers able to drive clients to appointments, to lunch, etc.?

8)  Is there a lot of employee turnover? If so, why?

9)  Are you affiliated with local hospitals? If so, which ones?

10) Do you have case-managers? How often do they visit clients? Will they go to medical appointments? Are they available for emergencies? What are the fees for these services?

Depending on the agency, the fees can range between $125 and $165 per hour. Though it’s expensive, if your family can afford it, it’s worth it.  Case managers help coordinate all aspects of care, including assigning caregivers, and following-up with physicians. And they advocate for their clients.

11) What are the fees for caregiver hours?

12)  How often do you bill? Do you bill directly to long-term care insurance companies, or do clients have to pay upfront?

13)  How do you communicate with family? By email and/or phone. How often? Who are you allowed to speak with? All family members, or just a designated individual like a health care proxy or legal guardian?

If you’re the one designated to speak to the case manager and other staff, I urge you to remind them to send you updates on a regular basis, otherwise they will forget. Remember, you are your loved one’s voice.

Feel free to offer feedback.

Good-luck!

 

 

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