Chapter lll:

Living at Home

with Some Assistance

Part Ill: At Home with Assistance

Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.

—Laozi, Chinese philosopher and writer

THE FAMILY CONVERSATION #3

WHAT KIND OF HOME CARE DO YOU NEED?

As they get frailer, many older people want to remain in their own home, provided they can get the assistance they need to remain safe and comfortable.

Initially, many families turn to informal, unpaid caregiving for their elderly loved ones—perhaps adult children, other family members or neighbors who can check in periodically. But at a certain point, your loved ones may need more care than family caregivers can realistically provide on their own. In some cases, they may need physical help getting around or custodial care, assisting with daily tasks or chores. In other instances, their functional limitations may be greater, and they may need more substantial help along what elder law attorney Brian Tully calls the “Elder Care Continuum.”  

Assessing both the physical and mental needs of your aging loved ones is not always simple. Their condition may change subtly over time and behavioral shifts are not easily diagnosed by non-professionals. And often, elderly parents, themselves, are not able to recognize that they’re having trouble facing day-to-day difficulties.

Even when it’s clear the time has come to seek professional home care, you’re still faced with a host of questions:

  • What kind of care is required?
  • Who’s going to give this care?
  • Where are we going to get it?

The first task is understanding what, exactly, is meant by “home care services”?

Indeed, home care can mean many different things. Such services might be available for people returning home from hospitalization; or those who are getting frail but can still live somewhat independently; or those who are chronically ill or disabled and require long-term care. Home care services generally fall into two categories:

  • Non-medical or custodial/companion supportive services. These care services may arrange for assistance with shopping and transportation; homemaking, such as meal preparation, cleaning, yard work and laundry; and personal care, such as bathing and getting dressed.
  • Home health care services. These services may also include some non-medical assistance, but primarily involve care from health care professionals, such as licensed practical nurses, therapists or home health aides. Most of these professionals work for home health agencies, hospitals, or public health departments licensed by the state.

When assessing individuals who need non-medical assistance, geriatric care experts typically look at six physical categories known as “Activities of Daily Living,” or ADLs, which most people should be able to do without help:

  • Eating
  • Dressing
  • Bathing
  • Transferring (getting in and out of bed or a chair)
  • Toileting (grooming and personal hygiene)
  • Continence (ability to use a restroom)

Experts also look at a second set of categories, known as Instrumental Activities of Daily Living (IDALs), which are more complex mental  skills that people need to live independently. These learned skills usually include:

  • Preparing meals                                
  • Doing laundry
  • Light housework
  • Using a telephone
  • Organization & managing money
  • Shopping for personal items
  • Using modes of transportation

This is the time to convene a family conversation about home care. Initially, such conversations are likely to focus on non-medical care, known as custodial or companion care, unless a loved one is returning home from a hospitalization and needs some professional medical care, like physical therapy, as well. Don’t be surprised if your loved ones resist help. It can be emotionally difficult for people to recognize new limitations; it means accepting a loss of independence. Add to that the anxiety parents feel about being a burden to their family—and whether they’ll have enough money to cover expenses for professional caregiving assistance. “Don’t worry about us,” they may insist. “We’ll be fine.”  

But that doesn’t mean they are.

In the case of my own family, we started our search looking for a private home health aide. Preferably, one who knew Spanish, since that was my Mom’s first language, and would possibly agree to live-in for at least a portion of the week. We asked her church’s minister for help in finding someone who was highly recommended.

Mom was mostly fine living alone for the first 10 years after Dad died. Three of her sons were living on Long Island and usually visited with her weekly. She often drove herself to visit friends, church and her sons’ homes, especially to be with her grandchildren.

But over time, Mom required higher levels of care. At first, she resisted help from outside of the family, since one of my brothers had moved back home, and she wanted to rely mostly on him.  We realized, however, that this wasn’t a fair or sustainable arrangement—for either her or my brother, so we began another round of family conversations to sort out various options.

Our first two aides were private hires. They worked out well, but there were some bumps in the road, of course. The first was a car accident that Mom was involved in, which resulted in a broken kneecap. Her convalescence was long and required some physical therapy. As her knee healed, her mind began getting cloudy; she shuffled when she walked, and she was extremely tired. At first, we feared it was either depression or the start of dementia. At the suggestion of our oldest brother, a doctor, she was taken to a specialist who diagnosed Mom as having hydrocephalus, an excess of cerebrospinal fluid surrounding the brain. Thankfully, it was treatable, and Mom recovered quickly, but it served as a loud wake-up call that we needed to be more vigilant about Mom’s changing home care needs and challenges, which would increase over the years into a long-term plan.

Whatever avenue you choose to provide home care, it’s important to do some advance preparation and planning. It’s difficult to make the best decisions about such care amid a crisis. Remember, you’re bringing in an outsider to your parent’s home, and this caregiver must be trustworthy and compatible with your loved ones’ personality, habits and expectations.

You must remain vigilant and involved, reviewing the care plan with your family and the home care agency on a regular basis. While supporting the aides, you also need to steadfastly advocate for your parents, perhaps even showing up unannounced occasionally to make sure your loved ones’ plan is being carried out as directed.

Some Guidelines for Family Conversations 

  • Create a circle of caring individuals around your loved ones to help build trust and a sense of safety. Try to maintain an active and steadfast group, involving several family members, as well as a doctor, social worker, geriatric case manager, and members of your loved one’s house of worship.
  • Find ways to get and keep other family members, especially your siblings, involved—even if they may seem noncommittal or live far away. Everyone responds to life changes at their own pace. Listen to your other family members; allow for different points of view.
  • Respect your parents’ views and get their input. You may need several discussions to unearth sensitive issues. Be aware of how your parents’ ethnic or cultural traditions might affect their feelings about having “strangers” come into their home to take care of them. Compromise may be required; your loved one may agree to accepting some help now, while considering other needs later.
  • Make sure you don’t infantilize your parents. If you think your loved ones can do something by themselves, let them. But if you think they could be harmed, don’t feel guilty about getting involved. Emphasize that it’s all about their safety, first. If there is any demonstrable cause for concern, now is the time to insist on new rules, such as not allowing them to cook on a gas stove.
  • Identify areas of care that require the most attention and suggest specific options. Make a list of all the tasks and create a plan that assigns who will be responsible for completing each task, as well as follow-up meetings to evaluate your plan and make necessary adjustments.

Four big issues are likely to come up during conversations:

  • Driving

Nothing gives Americans a greater sense of independence than driving, but if an older person’s physical of cognitive skills become diminished, driving may become dangerous. Make sure your loved ones (and you!) have their eyesight and hearing checked every 1 to 2 years; and pay attention to any medications they’re taking that can make driving unsafe. If your parents are not ready to give up the keys, try to negotiate safer ways they can drive. For example: driving less frequently; only locally and in the daylight; or making only right turns, since left turns are riskier.

If your loved one is proficient using mobile devices, you might encourage them to use ride-sharing apps like Uber and Lyft.

For a helpful compendium of safety tips for older drivers, visit the National Institute on Aging website www.nia.nih.gov/health/older-drivers.

In addition, there are also several excellent (and free) driving skills and safety programs for older drivers, including:

Beyond Driving with Dignity

https://www.seniorcareauthority.com/beyond-driving-with-dignity/

This self-assessment program, offered nationally through the Senior Care Authority, a national senior placement and elder care consulting company, is designed to help older drivers and their families make appropriate decisions regarding an individual’s safe driving future. A variety of educational presentations are available to older drivers, their families, geriatric professionals, organizations and the general public. For safe drivers, presentations provide strategies on how to remain a safe driver as they age. If driving retirement is an appropriate decision, individuals (and their family) are offered possible alternatives, resources, and a specific plan to ensure a smooth and successful transition. Programs are delivered through local Senior Care Authority franchises. (On Long Island, go to www.seniorcareauthority.com/locations/long-island-ny/.)

AARP The AARP Smart Driver course (www.aarpdriversafety.org). This is a refresher  course designed for drivers age 50 and older. In many states, drivers may benefit from a discount on their auto insurance premium upon completing the course.

CarFit (www.car-fit.org). This educational program offers older adults the opportunity to check how well their personal vehicles “fit” them. The CarFit program also provides information and materials on community-specific resources that could enhance their safety as drivers, and/or increase their mobility in the community.

We Need to Talk (www.aarp.org/auto/driver-safety/we-need-to-talk/). This seminar helps assess your loved ones’ driving skills and provide tools to help have conversations about when it’s time to limit or stop driving.

AAA Roadwise (https://exchange.aaa.com/safety/senior-driver-safety-mobility/aaa-roadwise-driver/). This online or in-person course helps seniors get refreshed on their driving skills and learn helpful tips and recommendations based on the newest research. The course takes six hours to finish; participants get a certification via mail, and a discount on insurance. based on your insurance company and state.

National Safety Council Online Mature Driver Defensive Driving Course

(https://www.nsc.org/safety-training/defensive-driving). Tailored for adults 55 and older, this course puts its focus on improving the driver’s skill set. It takes into account an individual’s driving abilities and shows  how to avoid accidents, and become a safer, more defensive driver. The course  provides certification and eligibility for an insurance discount.

  • Finances. If there’s no evidence of problems, it’s better for caregivers just to offer help, like balancing a checkbook or organizing documents, which may give a sense of the bigger financial picture. But keep your antennae up for hints of trouble, like misplacing important papers or questionable spending (seniors are often targets of scams).
  • Home Safety. Review the steps outlined in Part II of this guide, assessing your loved ones’ home for fall prevention and overall safety. People can be slow to accept their physical limitations, so if caregivers see their parents having problems with gait or limb strength or has recently started using a walker or cane, it’s time to start the conversation—before some crisis occurs.
  • Health and Medications. If your parents seem healthy, there’s no need to intervene, but keep a watchful eye. Seniors may not fully understand their medical reports, or they could be withholding information because they don’t want you to worry. If family members observe any symptoms, or notice that a parent is mixing up medications, it’s time to step in.

NEEDS ASSESSMENT CHECKLIST

Case managers and health care agencies often identify care needs in terms of six Activities of Daily Living (ADLs), routine activities that people generally do without assistance, as well as Instrumental Activities of Daily Living (IDALs), more complex learned skills.

Here is a checklist to assess the needs of your loved one:

When discussing your loved ones’ caregiving needs with family members, it may be worthwhile to consider bringing in a professional geriatric care manager to lay out a clear plan and help coordinate care and services.

Geriatric care managers may be hired privately by families, as well as by social service agencies, hospitals, senior housing communities, attorneys, banks and trust officers, and gerontology professionals. They may serve as a stand-in provider when family caregivers cannot be around or when they live too far away.

A geriatric care manager’s focus is usually broader than strictly health care, with some emphasis on finances, housing and other aspects of an elderly person’s life. Their tasks often include:

  • Conducting care-planning assessments to identify a client’s needs
  • Creating and executing a care plan
  • Screening and monitoring hired personal caregivers
  • Acting as a liaison to families
  • Assisting with a client’s move to different care settings
  • Visiting clients on a regular basis to ensure their safety and wellbeing
  • Identifying social services agencies or programs that may benefit a client
  • Reviewing financial, legal or medical issues and referring clients to other experts

Generally, there are two types of care-planning assessments: A medical assessment, made by a family physician, a public health nurse or a physician specializing in geriatric medicine; and a social worker or case manager assessment, geared to those who require non-medical, in-home, or community-based services.

When you’re thinking about hiring a geriatric care manager, you should ask a number of specific questions about their practice, says Nina Dobris, an experienced geriatric care manager with Northwell Health’s Circle of Care Program:

  • What is your professional background?
  • Is there a cost for the evaluation?
  • Where is the evaluation done?
  • What is your fee structure (hourly or flat fee)?
  • Do you charge for travel time, texts, emails, phone calls?
  • What about a surcharge for after-hours emergencies?
  • How many clients do you service at once?
  • Do you work alone or with a group?
  • Are you available 24/7?
  • Who covers you when you’re off?

The geriatric care manager, in turn, should cover an array of questions when conducting an assessment:

  • What is the chronic condition or illness for which the person needs help?
  • What daily tasks can a person perform independently? For example, functional activities (ADLs), like grooming, toileting, and moving about; or mental activities (IDALs) like shopping, cooking, or housekeeping)?
  • Can the person follow directions, direct helpers or manage their own affairs?
  • What support is available from relatives, neighbors, friends or clergy to give care or monitor care at home?
  • In what way does the layout of the person’s home help or hinder independent living and can it be adapted with design changes or durable medical equipment, if necessary?
  • What services are available in the community to meet the person’s needs? Do they meet medical, financial and geographical criteria for these services?

Dobris, who’s been a geriatric care manager for 30 years, stresses in-person evaluations in a person’s home—following, of course, the current health and safety protocols, like wearing masks and social distancing.

“It’s important to see a person in their home environment,” she says, so she can observe their living conditions, especially since many seniors live alone. Once she completes an assessment, Dobris can provide various options for care services, ranging from one-time evaluations to ongoing advocacy for long-term care services. And while having more family members involved in the conversation can certainly be more difficult, Dobris tries to include even those who live out of town “so everybody is on the same page.”

To learn more about geriatric care managers go to the website of this professional group, the Aging Life Care Association (www.caremanager.org). Click on Find an Aging Life Care Expert to locate professionals in the New York area. Members include more than 2,000 social workers, nurses, gerontologists, and other related professionals. The website also provides links for consumers with advice about how to work with a care manager.

Here are some resources to help with managing geriatric care

PATIENT ADVOCATES

Patient advocates guide and support patients and their families through today’s often confusing and overwhelming health care system.

A patient advocate’s primary responsibility is to act as a liaison between a patient and the health care system, advocating for the patient’s needs, preferences and rights as a health care consumer to ensure that they receive the highest quality care possible. A private advocate is like a “healthcare quarterback” who helps patients navigate the many choices that can affect their health care outcomes, notes Vicki Ellner, the Founder and Administrator of Door to Door Doc.

Advocates may offer a wide range of specific services, depending on the needs of a patient and their family. These duties and responsibilities may include: 

  • Help with screening, diagnosis, treatment, and follow-up of a medical condition.
  • Setting up medical appointments for doctor visits and medical tests and accompanying patients, as needed.
  • Coordinating care between multiple providers and communicating with insurance companies and other healthcare organizations.
  • Assisting patients transition from hospitals to home or extended care.
  • Ensuring a patient's safety while they’re at a health care facility, including bedside monitoring.
  • Providing resources and research to help patients understand their diagnosis and treatment options.
  • Communicating with doctors and other providers to make sure that patients’ voices are heard and they get the information they need to make decisions about their own health care.
  • Reviewing medical bills to make sure that they’re accurate.
  • Resolving conflicts between patients and health care providers.
  • Helping find financial and legal resources.

Many advocates earn certification from the Patient Advocate Certification Board, an organization that sets competencies, ethical standards and continuing education for advocates nationwide. The designation of Board Certified Patient Advocate (BCPA) is a credential earned by those who have passed the board’s official exam. 

While a patient advocate’s role may include some of the tasks of a geriatric care manager, an advocate is available to assist an individual of any age, not just an elderly person. In addition, an independent patient advocate—one paid for by the patient or their family—is focused on a person’s individual health care needs and preferences. “We advocate for what the patient wants; we make sure we’re speaking for them,” says Caryn Isaacs of GetHealthHelp.com. 

Successful patient advocates are typically compassionate, organized and effective communicators. “We work with you to bring together families, social workers and doctors to communicate about diagnosis, treatments and alternatives for care,” says Dr. Georganne Vartorella, a national patient advocate, physician and public speaker. “We remove risks and roadblocks to keep everyone working together for aligned goals.”

While patient advocates often offer a similar array of services, they also develop their own specialized approaches to the field of advocacy. Their role can be diverse or very specific to the needs of a patient and their family. Some examples:

  • Marc Berlin, founder of On the Marc Patient Advocacy Services, assists older adults as well as adults with developmental and intellectual disabilities to obtain the services needed for them to live independently and age safely in place. A Board Certified Patient Advocate, he provides navigation, home health referrals, medical supplies, and special tools, such as a Medical Identity Card, which contains the vital information an individual may need in case of an emergency.
  • Nicole Christensen, the CEO of Care Answered and author of From Crisis to Calm, stresses the role of advocates in ensuring that patients and families understand their best care options and are equipped to act on them—particularly during transitions of care, such as a change in location (for example, a hospital to home or a nursing home), or the need for different care in the home due to a decline in health. “Care Answered navigates patients and families through the healthcare system while giving them peace of mind,” says Nicole, who is a Board Certified Patient Advocate “Patients should be prepared, not scared.”
  • Ilene Corina, founder of the nonprofit Pulse Center for Patient Safety Education & Advocacy, has been dedicated to raising awareness about patient safety. “We have to be ready as patients to know what to expect, to understand what the health care policies are so we can to take action in doing our part in staying safe,” says Ilene. The author of Teaching Patient Safety, An Educator's Guide, she advocates for vulnerable populations, such as people who have various disabilities, people who are transgender and people with limited English. “It’s given me insight into problems often not recognized by the healthcare system,” she says. “Patient safety happens at the bedside, not in the board room.”
  • Vicki Ellner, the Administrator of Door to Door Doc, is a Registered Nurse who specializes in providing home visits with a physician to provide primary care for seniors who cannot get to a doctor's office. “We oversee all aspects of our patient's medical care,” Vicki says. “Our goal is to make caring for older adults as easy as possible in the comfort of their home.”  Vicki’s also been hired to determine care plans, coordinate services, visits to oversee care, disease management and interfacing with providers who are involved in the care of a client. “The most integral part of the process,’ she says, “is having the experience and knowledge to determine the next best steps.”
  • Caryn Issacs looks forward to tackling challenging cases—“helping people who are in a tough situation. They have no one at all to advocate for them.” Caryn often brings in other experts, like elder care attorneys and physical therapists, to work with clients. “I’m not going to make decisions for them, but I help them understand their options,” she says.

What to Ask When Hiring a Patient Advocate

  • After describing your personal situation, ask the patient advocate, “Have you dealt with similar situations?”
  • Are you a Board-Certified Patient Advocate?
  • Are you and/or your business insured?
  • How many years have you been an advocate and what was your experience prior to being an advocate?
  • What is the cost of your services?
  • Can you take on a new client with the kind of needs I described right now?
  • Will you personally be the patient advocate for me or my loved one?

Here are some more resources regarding patient advocates

HIRING HOME CARE AIDES & AGENCIES

If you want to hire in-home care services for your loved ones, you need to become familiar with the industry terminology—the classification of different kinds of aides, services and agencies.

First, there are several different types of home-care workers:

  • Personal or Custodial aides (PCAs). These aides provide assistance with personal, non-medical care tasks such as companionship, bathing, meal preparation, shopping, and housekeeping.
  • Home health aides (HHAs). These aides also can assist elders with personal care but have a higher level of training and attend to tasks such as managing more complex diet regimes, handling simple dressing changes and taking basic vital signs.
  • Medical professionals. Registered nurses, physical therapists, occupational therapists, and speech therapists may also provide care in the home, as needed.

Second, there are two types of home health agencies:

  • A Licensed Home Care Services Agency or LHCSA (pronounced “Licsa”) offers long-term medical and non-medical home care services to people who can pay privately or have long-term care insurance coverage. These agencies also may contract to provide services to Medicare/Medicaid beneficiaries whose cases are covered by a Managed Long-Term Care (MLTC) plan.  Services may include assistance with Activities of Daily Living (ADLs), nursing care, personal care aides or home health aides, social workers and physical or occupational therapy. Community Medicaid services must be approved by the Nassau or Suffolk Department of Social Services, and the number of hours or care depends on a recipient’s needs.
  • A Certified Home Health Agency or CHHA (pronounced “Cha “) usually provides part-time, intermittent health care aides and support services to individuals who need intermediate and skilled health care, often after a hospital or short-term rehab stay. CHHAs are certified by Medicare and Medicaid to provide such services, as well as long-term nursing and home health aide services, as well as provide or arrange for other services, including physical, occupational, and speech therapy; medical supplies and equipment; and social worker and nutrition services. These services may be paid for privately. or reimbursed by Medicare, Medicaid and some health insurers.

You can hire home aides privately or decide to go through a home-care agency. If you hire through an agency, be aware that the services of home health agencies are monitored by the New York State Department of Health, while personal care and companion care agencies are not.

As with any hire, caregivers should consult with close friends and family members, but also talk with doctors, other health care professionals, geriatric care managers, social workers, clergy members, hospital discharge planners and senior services specialists and advocates.

There are also several good local resources to find home health or personal care agencies, including two professional organizations, the National Aging In Place Council (NAIPC) Long Island Chapter and the Senior Umbrella Network, SUN (Nassau and Suffolk Chapters).

NAIPC: https://ageinplace.org/chapter-long-island/

SUN: Nassau Chapter: https://sunnassau.wildapricot.org/; Suffolk Chapter: https://sunsuffolk.wildapricot.org. Click directory and search by Category.

In addition, the New York State Department of Health provides a comprehensive listing of certified and licensed home health agencies operating across the state. There are dozens of CHHAs that serve Long Islanders (31 in Nassau and 30 in Suffolk County) and here are hundreds of LHCSAs serving local residents (549 serving Nassau and 225 serving Suffolk). The department’s website enables you to search for profiles of CHHAs or LHCSAs by county and type of services provided. It also offers a page where you can compare the performance of individual agencies according to data on five major quality measures, although many agencies have too few cases or insufficient data to report. Visit https://profiles.health.ny.gov/home_care/

The Nassau County NY Connects website also offers a listing of providers of local home health services and personal care aides. And the Suffolk County Office for the Aging provides a list of CHHAs in Suffolk County, as well as a list of personal care agencies, upon request (www.suffolkcountyny.gov/aging click How Do I?)

The federal government’s Medicare website also offers a “Home Health Compare” page. You can search for  Medicare-certified agencies by location or name and review patient quality measures compared to the average performance of agencies in New York State and nationwide.

What to Ask When Hiring a Home Aide

Hiring a home health worker has gotten much more complicated these days, as families to consider the daily needs of their loved ones, while also protecting them from the threat of the coronavirus. “People are very, very concerned,” says geriatric care manager Nina Dobris of Northwell. “They’re dealing with our most vulnerable population.”

Hiring from an Agency

When hiring an aide, then, caregivers must be diligent in discussing with agencies the protocols they have instituted to ensure the safety of their clients. That means practices such as wearing appropriate personal protective equipment (PPE), frequent handwashing, cleaning and disinfecting surface areas in the home, and physical distancing from clientele. “It’s all about stopping the transmission process,” says Dobris.

Besides addressing ongoing public health-related issues, caregivers should ask agencies a number of pragmatic questions about their business practices:

  • Does the agency have a brochure describing services and costs?
  • How long have they been servicing your area?
  • Does the agency have a current license to practice, if required by the state?
  • Does the agency prepare a care plan for the patient, with input from the patient, his or her doctor and family members?
  • How do supervisors oversee care and assess patients to ensure quality?
  • If the caregiver is sick or otherwise unavailable, what are the alternative arrangements?
  • Are there procedures in place for emergency situations, 24/7?
  • How are agency caregivers hired trained?
  • How does the agency screen prospective employees, including criminal background checks?
  • Will the agency provide a list of references for its caregivers?
  • Are there minimum hourly requirements for visits?
  • How much does the agency charge, and is there a sliding fee schedule based on ability to pay? Is financial assistance available?
  • Is the agency bonded and insured in case of injury or theft?
  • How does the agency document that its services were completed?
  • What is the procedure for resolving problems if they occur?

Take the time to prepare aides and their managers with information (both verbally and in writing) affecting your loved ones’ care, such as:

  • Health conditions, including illnesses and injuries
  • Signs of an emergency medical situation
  • General likes and dislikes
  • Medications, including how and when each must be taken
  • Need for dentures, eyeglasses, canes, walkers, hearing aids
  • Allergies, special diets or other nutritional needs
  • Therapeutic exercises with detailed instructions

Once you’ve narrowed down your list to a few prospective agencies, you should continue your due diligence, checking out the New York State Department of Health website for any information about the agencies, including agency-to-agency comparisons of services (when available) and a record of any complaints. You can also click on the New York State Home Care Registry to check the employment records, certification and other available information about individual home care workers.

Finally, consider visiting the staff at an agency to get a feel for how their operation works. Home care is not an industry many families know much about, and it’s important that they collect as much information as possible, so they feel confident in finding the right care, says Rick Schaefer, Chief Operating Officer for Better Home Care, which serves the Nassau, Suffolk and Queens region. Family caregivers are naturally anxious about these decisions, says Schaefer. “You’re looking for an advocate for your loved one, someone who will be part of a solution with a good outcome.”

 If you have any concerns or complaints with an agency, discuss them immediately. If dissatisfied with the agency’s response, phone the state department of Health (800-628-5972). Calls are then referred to a regional office – Metropolitan Area Regional Office of New York State Department of Health’s Home Care and Hospice Complaint Unit: 212-417-5888.

Hiring Aides Privately

If you’re hiring a private home health care provider—which may be less expensive than engaging an agency—it’s even more important to conduct a thorough screening, including an interview with the home health caregiver. Spend a day with the caregiver before the job formally begins to discuss what is involved in the daily routine—and put a daily care plan agreement in writing.

Hiring Family Members as Aides

In some instances, family members can be paid directly as caregivers, just as other self-employed professionals would be. (See “Consumer Directed Personal Assistance Program,” or CDPAP) Amy Goyer, a caregiving expert for AARP and author of Juggling Work and Caregiving, notes that if families choose to go this route, they should create a written contract, setting out full duties and responsibilities, scheduling, time off and payment. The caregiver would need to declare income, pay taxes and Social Security, and perhaps estimated quarterly taxes. Have your loved ones count your payment as a medical expense for tax purposes. And be professional, Goyer advises. Caregiving is a job and family caregivers need to get regular feedback from their loved ones regarding their care plan.

Here are some additional resources for home care help

Here is a sample home care agency Plan of Care

RETURNING HOME
FROM A HOSPITAL STAY

If your loved one has been hospitalized and then able to return home, he or she may require special planning for short- or longer-term care, including in-home assistance, as well as care in a rehabilitation facility. It’s important for patients and their caregivers to make early contact with the hospital’s discharge planner—often a social worker or nurse—who coordinates the discharge before leaving the hospital.

Discharge Procedures Required by New York State

State regulations require that hospitals provide a coordinated discharge planning program to ensure continuity of care for their patients following hospitalization. That means that patients must have a written discharge notice and written discharge plan—identifying all health care services that will be required—at least 24 hours before leaving the hospital. But often, that’s not much time to prepare before your loved ones are discharged, so be proactive!

A range of hospital health care professionals may play a role in assessing a patient’s post-hospital needs, with the patient’s doctor authorizing the hospital discharge. And the discharge-planning must include patient and family participation in the decision-making process.

The CARE Act

Under new state law, the CARE (Caregiver Advise, Record, Enable) Act, hospitals are now required to allow patients the opportunity to designate a family caregiver for inclusion in medical records. In addition, the law requires that hospitals offer to meet with the designated caregiver to discuss the patient’s plan of care before the patient is discharged or transferred to another facility, and that the family caregivers be given instruction by the hospital of health-related tasks they will be expected to provide for their loved ones at home, such as administering medications. (For questions about the CARE Act, contact the Division of Hospitals and Diagnostic & Treatment Centers at 518-402-1003 or by email at hospinfo@health.ny.gov.)

By law, every hospital in New York State must provide patients with a copy of a booklet spelling out their rights as a hospital patient, including “An Important Message from Medicare,” which explains what to do if patients feel they are being discharged without an adequate care plan in place. For assistance and information regarding any concerns or complaints related to their hospital stay that cannot be resolved by the discharge team, patients should contact the New York State Department of Health (631-851-4300; https://www.health.ny.gov/).

But even with a state-mandated discharge process, there are usually several critical details for family caregivers to work out. Here are some important questions to consider:

  • Will your loved one need any special equipment or supplies, such as a hospital bed, commode or shower chair?
  • Does your loved one’s home require rearranging rooms or items to accommodate large equipment and ensure a safe, comfortable living space?
  • Do you need home modifications, like ramps or handrails?
  • Are there new medications to be taken, and how should they be administered?
  • Are there limitations or restrictions on what your loved one can do, such as driving or walking up or down stairs?
  • Are there certain tasks that you, as a family caregiver, do not feel comfortable doing, such as helping with personal hygiene?
  • If temporary or longer-term home care is required, what kind of home aide or skilled care, such as physical therapy, does your loved one need?
  • Will Medicare and/or your loved one’s health insurance pay for prescribed services, equipment and supplies?
  • How much time can you spend as a family caregiver, given other commitments such as work and caring for young children?

For a more comprehensive list of action items to review when you or your loved one prepares to leave a hospital, log on to The Centers for Medicare and Medicaid website (https://www.medicare.gov/publications/search?field_publication_category_value=All&field_publication_language_value=All&keywords=discharge+planning) and download the booklet, “Your Discharge Planning Checklist.” 

The transition from hospital to home can be difficult for the family—especially if it requires an interim step of a loved one being placed in a rehab facility. My family was faced with such a situation when Mom broke her pelvis. She stayed in a local hospital for a few days, well cared for, but then we were informed that her hospital coverage had reached the limit and that she needed to be transferred either home or to rehab within 24 hours. Going home was not really an option; we weren’t equipped to handle Mom’s rehab needs. The discharge team gave us a handful of suggested facilities, but we still felt somewhat blindsided, having to make such evaluations with scarcely enough time to weigh different choices.

As it turned out, the facility was terrific—well staffed, vigilant, with good food and attendants who helped with everything from medical monitoring and administering her meds to dressing her. My brothers and I took turns visiting her daily.

The healing process lasted several weeks, but we were covered by Medicaid, Medicare Part A and B and a Medicare Part B supplemental plan—until Mom’s physical therapy improvements plateaued. At least this gave us more time to consider caregiving alternatives for Mom going forward.

To remain safely and comfortably in their homes, your loved ones also may need durable medical equipment (DME) such as walkers, canes, wheelchairs, commodes, hospital beds and pressure mattresses. These are reusable devices, as opposed to disposable medical supplies, like gloves, injection needles, blood testing strips and catheters that are only used once and then thrown away.

Private insurers often cover a good portion of the costs associated with prescribed durable medical equipment but generally don’t cover disposable materials. Medicare Part B covers medically necessary durable medical equipment if your doctor prescribes it for use in your home. But Medicare doesn’t cover certain types of durable equipment such as hearing aids, while disposable medical supplies are occasionally covered for items such as diabetic testing.

For those who qualify for Medicaid, the program does cover a wider variety of durable medical supplies than Medicare, including hearing aids, and doesn’t have as strict limitations concerning the number of supplies and use duration. Medicaid also tends to cover a larger portion of expenses for qualifying medical supplies. And the Veterans Administration offers a valuable resource for obtaining essential medical supplies at low or no out-of-pocket cost.

Physicians, social workers, pharmacists, and surgical supply stores can assist families in locating proper equipment. Be sure to obtain a doctor’s order before buying or renting special equipment—a prescription is usually required for Medicare and Medicaid coverage. As I discovered in caring for my mom, it’s also important for the family to work closely with your parents’ doctors and home health aides so you can review the needs for durable medical equipment as their health situation changes. There came a time, for example, when we realized that despite the familiar comfort of the marital bed Mom once shared with Dad, she needed to sleep in a hospital bed with guard rails to prevent her from falling out, and mechanical controls to raise and lower the height of the bed, as needed.

Resources include:

Local service organizations such as the Arthritis Foundation (631-427-8272) and Rehab Solutions (516-867-0089) operate free “loan closets” for medical equipment and supplies.

Center for Hearing Health

516-628-4300

Located in Mill Neck, the center features state-of-the-art adult and pediatric testing areas and an assistive listening device room with doctors of audiology who are leaders in their field. Services include hearing aid consultations and follow-ups, counseling and hearing aid dispensing. Through its mobile audiology van and on-site visits, the center offers hearing care and screenings to communities throughout Nassau County and western Suffolk.

TRAID

(Technology-Related Assistance for Individuals with Disabilities)

https://www.siloinc.org/traid

631-880-7929

TRAID is a federally funded program administered by the New York State Justice Center for the Protection of People with Special Needs. TRAID connects people with disabilities who need affordable means of acquiring devices with people who wish to sell or donate such devices. The program, which has 12 regional technology centers, coordinates statewide activities to increase access and acquisition of assistive technology for people of all ages and disabilities. In partnership with the NYS Justice Center, the Suffolk Independent Living Organization (SILO) oversees the Long Island TRAID Program, providing an extensive inventory of durable medical equipment items as well as assistive and adaptive devices on loan for free.



Long Island Communities of Practice (631-668-4858; www.licop.org) is the regional TRAID Center providing services to Nassau and Suffolk residents.

OTHER IN-HOME SUPPORT SERVICES & PROGRAMS

As many elderly couples decide to age in place, a burgeoning number of services and innovative products are becoming available to meet the needs of home-centric seniors. Not only is there a boom in home health care agencies, but a whole roster of other services has emerged, from telehealth and home-doctor visits to shopping, food delivery and handyman services.

Safety And Remote Monitoring Devices

With many seniors living on their own these days, more companies are producing high-tech devices to help caregivers monitor the health and safety of their loved ones from a distance. Services cover a range of products, including medical and emergency alert devices, home security systems, health monitoring and medication reminders. One company, Silver Maple Solutions (www.silvermaplesolutions.com) offers an innovative roster of easy-to-use devices to help families with remote caregiving, chronic care management, fall prevention and detection, social isolation and emergency response situations.

Many national companies offer these services, but they may not all be available in your area, so call and inquire about availability. Locally based companies may also be an option. (Do an online search, using keywords such as “medical alert systems” or “personal emergency response systems,” “safety and home health devices” or “home monitoring and safety systems for seniors.”)

Personal Emergency Response Systems (PERS)

While Medicare and most insurance companies typically don’t pay for emergency response systems, these alert systems can offer caregivers and recipients an extra layer of safety and security, enabling your loved ones to call for help in case of an emergency. A PERS has three components: a lightweight radio transmitter, a console connected to your telephone, and an emergency response center that monitors calls. Transmitters are battery-powered devices that can be worn around one’s neck, on a wrist band, on a belt or in your pocket. When people need help, they press the transmitter’s help button, which sends a signal to the console, automatically dialing one or more emergency telephone numbers. Most PERS are programmed to phone an emergency response center, which assesses the nature of the emergency and determines who should be notified.

In the event of a fall or medical emergency, a PERS can notify family and friends, as well as 911. Additionally, there are now many high-tech options that go beyond pressing the traditional button at home, such as auto-alert buttons that recognize a true fall and automatically summon help. There are also GPS location features; motion detectors that track movement in the home; medication reminders and monitoring of health vitals; daily check-in services; and home security monitoring for fire, smoke and carbon monoxide.

If your parent is a Medicaid recipient, he or she may be able to qualify for programs that cover some or all of the cost of an emergency response system. Some hospitals and social service agencies may subsidize the device for low-income users. If you buy a PERS, expect to pay an installation fee and a monthly monitoring charge. Rentals are available through national manufacturers, local distributors, hospitals and social service agencies, and fees often include the monitoring service.

A sampling of local medical alert providers:

United Lifeline

https://unitedadultministries.org/emergency-response-services/

516-364-3401

Northwell Health On Call Medical Alert System

www.northwelloncall.com

855-909-9643

Connect America Lifeline (formerly Philips Lifeline)

https://www.connectamerica.com/personal-emergency-response-systems/

800-852-5433

MDMedAlert

www.mdmedalert.com

240-608-8233

ADDITIONAL HOME CARE SERVICES

As many elderly couples decide to age in place, a burgeoning number of services and innovative products are becoming available to meet the needs of home-centric consumers. Not only is there a boom in home health care agencies, but a whole roster of other services has emerged, from telehealth and home-doctor visits to shopping, food delivery and handyman services.

Telehealth

Even before the pandemic, telehealth services had been growing rapidly in recent years. It made sense. Using technology to deliver virtual health care at a distance not only helps cut medical costs and save patient waiting time but expands coverage to seniors who may have difficulty getting to their doctor’s office. Of course, during the pandemic it also has helped limit exposure to the virus.

Some telehealth services are covered under Medicare Part B. These services include office visits, psychotherapy, consultations, and certain other medical or health services. For more information, see "Navigating the A, B, C's (and D) of Medicare". Coinsurance and deductibles apply, though some healthcare providers are reducing or waiving the amount you pay for telehealth visits.

Going forward, telemedicine is simply going to be an integral part of our system. As with in-person visits, it may be useful for family caregivers and home health aides to participate in these televisits, especially as their loved ones get frailer. Caregivers can ensure that their parents are communicating well with their doctors and intervene if they need help using the technology—something we all face, from time to time! 

For more information and articles on various telehealth-related topics, visit: www.aarp.org/health/conditions-treatments

Home Doctor Visits

Along with telehealth, other home health care services have expanded to include home doctor visits—a practice that largely vanished decades ago, but has now reemerged. Here is a selective sampling of several medical professionals in our area who offer medical care at home:

Door to Door Doc

www.daniellevinmd.com

516-455-9612

A physician house-call practice specializing in primary home care and nephrology for seniors who cannot get to a doctor's office. (Accepts traditional Medicare and most secondary insurance coverage.) Staff is equipped to diagnose and treat most acute or chronic adult medical problems and minor injuries. Other private-fee services include health care advocacy and medical care management, linking with other medical providers and services when needed.

A+P House Calls

www.apnphousecalls.com

516-725-5853

Offers comprehensive medical care in the home or office, specializing in disease prevention, diagnosis and treatment. Does not directly take insurance. Out-of-network services include house calls, concierge medicine, telemedicine, lab tests, x-rays, and referrals to other specialists.

House Calls at Northwell Health

www.northwell.edu

516-876-4100

This program provides home-based care for frail, chronically ill patients who have difficulty getting to the doctor’s office. The focus is on forming long-term relationships with patients and their caregivers, understanding their personal wishes about their care, and preventing hospitalization when frail patients prefer to be cared for in their own home.

Parker Jewish at Your Door

www.parkerinstitute.org (Click Services, then Parker at your Door)

718-289-2606

A medical house calls program of the Parker Jewish Institute, which serves Queens and Nassau Counties and provides a range of short-term rehabilitation services, long-term care and home health care. The program’s interdisciplinary team offers primary medical in-home care to patients.

House Calls Telephone Referral

www.NYhousecalls.org

866-268-0257

Offers in-home physician visits, as well as lab work, x-rays, wound care, podiatry, physical therapy and other home care services such as prescription management and medical supplies.

AIM House Calls (part of Advanced Internal Medicine Group PC)

www.aimgrouppc.com

516-352-8100

Provides home medical care for geriatric and home-bound patients, including physical exams, medication management, lab testing, EKGs, vaccinations, and referrals to other home health agencies and house call specialists, patient education and counselling.

Visiting Eyecare Service

www.visitingeyecareservice.com

516-565-2616

Provides vision care to patients in their homes, as well as long term health care facilities, adult day health centers and senior residences. Services covered by Medicare include treatment for ocular disease, prescription for glasses, glaucoma testing and retinal disease evaluation.

Help with Household Tasks

As homeowners get older and less active, taking care of all daily chores and tasks required to maintain their home often becomes more difficult. At the same time, a number of home and delivery services have emerged to help them to continue aging in place—a need that has grown exponentially as the pandemic has kept many seniors socially isolated in their homes. Some of these services are offered by local government and nonprofit organizations, others are private. A few examples:

Umbrella

516-882-4498

This organization offers people age 60 and older, living in Nassau and most of Suffolk County,  a hand with routine household tasks, such as painting, small handyman jobs, plumbing, cleaning, and yardwork. Members pay a $199 annual fee to join Umbrella and a  $20 hourly rate for prescreened “neighbors who perform small to midsized tasks. (Cost varies for big jobs.) Some communities have a waitlist for Umbrella’s services.

Expanded In-Home Services for the Elderly Program (EISEP)

Through the Expanded In-Home Services for the Elderly Program (EISEP) administered by the Nassau and Suffolk County Offices for the Aging, people 60 years of age and over who are above Medicaid eligibility may receive non-medical in-home services (homemaker/personal care, or housekeeper/chores). Programs may have waiting list.

Nassau County Office for the Aging

www.nassaucountyny.gov/aging

516-227-8900

Suffolk County Office for the Aging

www.suffolkcountyny.gov/aging

631-853-8200

Also worth considering as a resource for finding help around the house: local social media community groups like Next Door Neighbors (www.nextdoor.com).

Food Delivery and Grocery Shopping Services

Before the pandemic hit our restaurant-going habits, only a handful of eateries, did a lot of take-out and delivery business. But now, many restaurants throughout the area are offering full meals from their menu for take-out or delivery, as well reinstituting limited in-door seating. So it’s worth a call to your loved ones’ favorite restaurants to find out what their take-out and delivery policies are. There  is also a growing list of services that deliver groceries and prepared meals to homes in our area, including Pea Pod, Fresh Direct, Amazon Fresh, Instacart, and Blue Apron.

TRANSPORTATION FOR ESSENTIAL SERVICES

Many towns and cities on Long Island offer some form of free or discounted services for seniors who need transportation for “essential services”—daily errands such as food shopping or non-emergency doctor visits. While many transportation services were suspended during the pandemic, most local agencies have reinstituted services. But schedules may have been revised, so check before you or your loved ones venture out.

Here are some essential services and transportation resources in each town and city on Long Island

SPECIAL NEEDS TRANSPORTATION

For seniors and people with disabilities who are unable to use fixed-route, accessible public transportation, there are other “paratransit” options:

Nassau County

Able-Ride

The Nassau Inter County Express (NICE) bus system provides a shared ride, curb-to-curb service for persons who have a physical or mental disability. Age, or inability to drive are not taken into consideration in making an eligibility determination. Trips may be for any reason, including educational, personal, recreational, or business-related purposes. Service covers areas within three-quarters of a mile of fixed routes and not all communities in the county are covered. Reservations and a week’s notice are required (one-way fare is $3.75). Able-Ride customers can also travel from Nassau County to points east in Suffolk County or to points west in New York City by transferring to Suffolk’s SCAT or New York City Transit'’ Access-A-Ride paratransit system. Customers who transfer are required to pay both fares. For application to register and other questions, call 516-228-4000.

Suffolk County

SCAT (Suffolk County Accessible Transportation)

The SCAT paratransit system provides curb-to-curb service to individuals with disabilities who are unable to use regular Suffolk Transit public bus service. SCAT covers areas within three-quarters of a mile of fixed routes.  (The one-way fee is $3, exact change.) For applications and information, call 631-853-8337.

HART Paratransit

The HART bus system also provides shared ride Special Needs Paratransit for Huntington town residents whose disabilities prevent them from using fixed-route buses. All paratransit services require prior registration and enrollment. Call 631-427-8287.

Rides Unlimited of Nassau & Suffolk

https://www.nyconnects.ny.gov/services/rides-unlimited-of-nassau-and-suffolk-transportation-disability-services-sofa37880

631-234-0199

Rides Unlimited (RIDES) is a nonprofit transportation service for people with disabilities, which operated more than 100 routes daily in New York City, Nassau, Suffolk and Westchester counties. Accepts Medicaid; call for additional payment information.

Medicaid Medical Transportation

Medicaid recipients in Nassau or Suffolk counties also may be eligible for transportation for non-emergency medical purposes through LogistiCare Solutions, LLC. For information call 844-678-1103 or visit www.longislandmedicaidride.net.