Living at Home
LIVING AT HOME
Part III: Living at Home with Assistance
THE FAMILY CONVERSATION #3
WHAT KIND OF HOME CARE DO YOU NEED?
As people age in place, they often require more assistance to remain safe and comfortable in their homes. In some cases, your loved ones may need help getting around or taking care of daily chores. In other instances, caregivers may recognize that their parents or relatives need more substantial help, from warning signs such as:
- Withdrawal from social interactions
- Neglecting personal care or nutrition
- Signs of forgetfulness—for example, piles of unopened mail or unwashed laundry
- Mismanagement of monthly bills or odd purchases.
In-home care services can provide many different things, but generally, such services enable individuals with functional or physical limitations to remain safely in their own homes. They might be available for people who recovering from an injury or returning from hospitalization; those who are chronically ill or disabled; or those who are getting older and frail. Typically, home-care services fall into two broad categories:
- Non-medical supportive services. These care services may assistance with shopping and transportation; homemaking, such as meal preparation, cleaning, yard work and laundry; and custodial or personal care, such as bathing and getting dressed.
- Home health care services. These services may include some non-medical assistance—helping older adults with activities of daily living—but also 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.
Home care services may be provided short-term—for a few days or weeks—or long-term, over a period of many years. Some types of care and community services are free; other types you must pay for. But this type of care is usually less costly than care provided in an assisted living facility or nursing home, and it goes a long way toward lessening anxiety about the future for seniors and their family. Sometimes government programs or your health insurance will help cover the cost of certain home care services.
This is an opportunity for another kind of family conversation, sharing concerns, needs, and options with other family caregivers.
It’s not usual for your loved ones to 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.
It’s important to respect the wishes of your loved ones and get their input. You may need several discussions to unearth sensitive issues. Compromise may be required; your loved one may agree to the major needs and accept help for other needs later. Priorities may change as circumstances change, either gradually or suddenly.
Here are some guidelines for planning and carrying out such conversations:
- Consider a “circle of care,” involving several family members, as well as a doctor, social worker, geriatric case manager and member of the clergy to help build trust and a sense of safety—for both your loved ones and you.
- Find ways to get other siblings involved— even if it makes sense to have one primary caregiver. Allow for different points of view. Listen to your other family members.
- Be careful not to make your parents feel infantilized or pushed into situations. If you think your loved ones can do something by themselves, let them. But if they could be harmed, don’t feel guilty about getting involved.
- Identify areas or care that require the most attention and suggest specific options. Make a list of all the needed 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.
Here are four big issues likely to come up in the course of such conversations:
Driving. Nothing gives people a greater sense of independence than driving, but if a senior’s physical of cognitive skills become diminished, driving through hectic Long Island traffic may become a risky endeavor. If your parents are not ready to give up the keys, try to negotiate ways they can drive the car less frequently, perhaps only locally and in the daylight. (Several private local driving schools offer driving skills courses for seniors, and AARP also offers several useful programs, including Driver Safety Courses, “Carfit,” and “We Need to Talk.”)
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 the 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.
GERIATRIC CARE MANAGEMENT SERVICES
Besides discussing your loved ones’ caregiving needs with family members, it’s often worthwhile to bring in a professional geriatric care manager to oversee a comprehensive assessment, lay out a clear plan, and help coordinate the care and services.
Generally, there are two types of 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.
An assessment may cover an array of questions:
- What is the chronic condition or illness for which the person needs help?
- What tasks can the person perform independently (for example, shopping, cooking, grooming, toileting, moving about, 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?
- Given realistic choices, what are the person’s preferences for care?
OBTAINING DURABLE MEDICAL EQUIPMENT
To remain safely and comfortably in their homes, your loved ones also may need durable medical equipment assistive devises such as walkers, canes, wheelchairs, commodes or hospital beds. Physicians, social workers, pharmacists, and surgical supply stores can assist in locating proper equipment. Obtain a doctor's order before buying or renting special equipment—a prescription is usually required for Medicare coverage.
HIRING HOME CARE AIDES
If you need to hire in-home care services for your loved ones there are generally three different types of workers to consider: personal care aides, home health aides and medical professionals:
Personal and home health aides may be obtained through private hire or through home care agencies. Home health care agencies are licensed in New York State; personal care and companion care home care services are not. As with any hire, caregivers should consult with friends, family members and experts at the Nassau or Suffolk County Offices for the Aging.
Needs Assessment Checklist
What kinds of care services does your loved one need? Case managers and health care agencies often identify needs in terms of six Activities of Daily Living (ADLs—routine activities that people generally do without assistance.
Transferring (getting out of bed; getting out of chairs)
Toileting (grooming and personal hygiene)
Continence (mental and physical ability to use a restroom)
Instrumental Activities of daily living (IDALs)
Instrumental activities of daily living (IADLs) are more complex, learned skills needed to live independently. These skills usually include the following:
QUESTIONS TO ASK
When hiring a home health worker from an agency, consider these questions:
- Does the agency have a brochure describing services and costs?
- 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 closely do supervisors oversee care to ensure quality?
- How does the agency document that its services were completed?
- If the caregiver is sick or otherwise unavailable, what are the alternative arrangements?
- How are agency caregivers hired and trained?
- How does the agency screen prospective employees, including criminal background checks?
- Will the agency provide a list of references for its caregivers?
- Is there a sliding fee schedule based on ability to pay, and is financial assistance available to pay for services?
- Is the agency bonded and insured in case of injury or theft?
- What is the procedure for resolving problems, if they occur?
If you’re hiring home health care directly from an individual provider instead of an agency, it’s even more important to conduct a thorough screening, including an interview with the home health caregiver. Whichever way you choose to hire, spend time preparing the person who will provide care. 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 in writing. Inform the agency and caregiver (both verbally and in writing) of various factors affecting your loved ones’ care, such as:
- Health conditions, including illnesses and injuries
- Signs of an emergency medical situation
- General likes and dislikes
- Medication, 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
Paying for Care
The cost of home care varies, depending on the type of health care professional required. Medicare can provide some home care assistance, but in general, Medicare does NOT cover custodial or personal care, 24-hour care, or long-term care. Home care services covered by Medicare include skilled medical care, such as nursing care, or physical, speech or occupational therapy. Medicare-funded care must be ordered by a doctor, and the home care aide must come from a Certified Home Health Care Agency, or CHHA. These agencies are approved by the state Health Department to provide part-time, intermittent and skilled health care.
Other public options for paying for home care services include Medicaid and the U.S. Department of Veterans Affairs (Aid & Attendance Program). Through Medicaid in New York State, care recipients or those acting on their behalf may have the option participating in the Consumer Directed Personal Assistance Program (CPAP), which allows them to assume full responsibility for hiring and supervising home care aides. (For more information about the requirements for CPAP, contact the Nassau or Suffolk social services departments of offices for the aging.)
If your family member has private long-term care insurance, it may cover some home care, and some policies permit family members to be paid. To learn more about ways to pay for home care, visit the U.S. Department of Health and Human Services website, LongTermCare.gov (http://longtermcare.gov/costs-how-to-pay/).
Here are some resources that may help you pay for your loved one's care
RETURNING HOME FROM A HOSPITAL STAY
If your loved one has been hospitalized and then able to return home, they still may require special planning for short- or longer-term care, including in-home assistance, as well as care in in a rehabilitation facility. So 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.
State regulations require that hospitals provide a coordinated discharge planning program to ensure continuity of care for their patients following hospitalization. Hospitals must provide patients with a written discharge notice and written discharge plan at least 24 hours before leaving the hospital. And all health care services identified in the plan must be in place before the patient leaves the hospital.
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 regarding post-hospital care and the selection of specific services.
The CARE Act
Also, under a recently enacted 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 firstname.lastname@example.org.)
There are usually many details to work out. Here are some important questions for caregivers to consider:
- Will your loved one need any special equipment or supplies, such as a hospital bed, commode or shower chair?
- Will Medicare and/or your loved one’s health insurance pay for prescribed equipment and supplies?
- Does your loved one’s home require rearranging rooms or items to accommodate large equipment and ensure a safe, comfortable living space?
- Are there new medications to be taken, and how should they be administered?
- Are their 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?
- How much time can you spend as a family caregiver, given other commitments such as work and caring for young children?
- If temporary of longer-term home care is required, what kind of home aide or skilled medical care does your loved one need—and what is covered by Medicare?
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; www.health.state.ny.us).
TRANSPORTATION RESOURCES TO MAINTAIN INDEPENDENCE
One of the biggest challenges for seniors as they age in place is finding adequate transportation in suburban communities like Long Island, especially when they no longer feel comfortable driving in heavy traffic or at night. The inability to get around not only make it difficult to carry out daily chores, it creates a significant barrier to maintaining regular social connections—and a healthy sense of independence.
But there are several ways to help loved ones find rides or make use of public transportation:
Here are some resources to help your loved one stay mobile
Here are some resources to help your loved one accomplish essential tasks
Here are a few resources for medical and special transportation
OTHER IN-HOME SUPPORT SERVICES
Besides essential transportation services, in-home support programs provided by county and local senior agencies may include services such as yard clean-up, light housekeeping and errands and home-delivered meals. (See agency listing in Part I, Town & City Government Resources.)
In addition to programs designed to promote socialization, several town agencies offer a Telephone Reassurance Program: A free program for seniors who live alone, are home-bound, or who might just benefit from receiving a friendly phone call from a volunteer each day.
The Retired and Senior Volunteer Program (RSVP) in both Nassau and Suffolk counties also offer telephone reassurance and friendly visiting programs.
RSVP of Nassau County
516-496-7550 ext. 302268
RSVP of Suffolk County
ADULT DAY CARE SERVICES
As seniors age in place, they may become physically, emotionally, or mentally frail, yet may be able to continue living in their homes with the support of community-based programs like adult day care. In addition to the specialized care of the older person, families receive daytime respite which enables them to continue to be supportive in a caring way.
Adult day care programs are provided in structured settings, often through town and city government agencies or private assisted living, nursing and other health care facilities. Programs include a variety of health, social and related support services offered during any part of the day, but for less than 24 hours. They are usually described as either social or medical model programs:
Social model programs provide socialization, personal care, supervision, recreation, and a healthy meal, within a protective setting.
Medical model programs are designed to meet the needs of those elderly who require medical and rehabilitative services in addition to the services offered by social model programs. Medical adult day care programs are licensed by the New York State Department of Health.
Eligibility, fees and services vary. Medical model programs may accept Medicare and Medicaid payments; others charge on a sliding scale, based on income, or accept donations.
For most programs, participants must be ambulatory and manage personal toileting needs. Some programs accept participants accompanied by home health aides. Therapeutic recreation and social activities, as well as cultural and educational programs, are adapted to the abilities of each participant. Other services may include transportation, information, and referral for social services, personal and family counseling, and nutritional counseling.
Family caregivers should visit an adult day care facility to get the best information about its physical setting, staff, level of individual care, and other service components. Based on an interview and assessment, the facility staff and the participant’s physician develop an individualized plan of care.
Comprehensive listings of adult day care programs in Nassau and Suffolk counties can be found in these resources: