Coping with long-term illness is one of the most serious challenges that individuals and their families can face today.  Often the responsibility to assist and navigate systems falls upon children and spouses, whose lives may be complicated already by the demands of their own families or careers.  Information about care resources and financial support for the care of a loved one can be hard to find, and what’s available often is confusing.

At the end of this Guide is a discussion of financing long-term care, including how a Pooled Trust or individual Disability Trust may help with the challenges.

When is Help Needed

Family members are often the first to recognize physical or cognitive decline. But it can be difficult to know who and when to ask for help.  The situation is especially difficult if the person who needs the help does not want to ask for it, or resists the efforts of others. Added difficulty also can arise if not all family members are in agreement as to the problem or the need for assistance .

Signs that outside help may be needed include such symptoms as—

  • Loss of balance, frequent stumbling and/or falls
  • Sharp decline in self-care, including failure to remember or take medications
  • Acute communication problems, such as severe confusion or disorientation
  • Leaving outside doors open, the stove on, or the car running
  • Depression, withdrawal or loneliness
  • Loss of vision or hearing
  • Change of personality

These kinds of symptoms can develop slowly over time, which is usually the case with dementia, Parkinson’s disease and other long-term conditions; or they can come on quickly, through a stroke, an accident or a serious fall.  Sometimes medical providers may offer a diagnosis that helps to explain the situation and provides guidance on how to respond.  But, as a practical matter, it usually falls to the family to look at the whole picture—the living situation, what supports are available, the individual’s physical and emotional condition, and financial options—and decide whether outside help is needed, and if so, what kind of help to seek.

What Kind of Help is Needed?

Before trying to decide where to get help, it is important to be clear about what kind of help is needed.  Different providers will offer one or more of the following kinds of services—

  1. Help with daily activities, such as cooking, dressing, bathing or taking medications.  The professionals who offer this kind of help are usually referred to as “home health aides.”
  2. Safety Issues: Protection from self-injury at home, such as leaving the stove on, repeated falls or “wandering,” i.e., leaving the home on foot and not remembering the way home.  This kind of help may require home adaptation and structure or 24-hour home health aides.
  3. Time with others and opportunities to socialize to limit isolation.  This kind of help usually is provided by a local Senior Center, or by an Adult Day Health program, and it requires leaving the home to go to the program.These programs can also provide medical care and daily oversight. 
  1. Transportation to appointments. Local communities and  Municipal services, such as “The Ride,” can help with this, as can volunteers from local Senior Centers or Elder Services agencies.
  2. Help with medical procedures, such as post-surgical care, injections or wound care.  This kind of care requires a nurse or other licensed medical provider to come to the home. VNA’s can be helpful or medical day programming. 
  3. Management of finances.  Bookkeeping, bill-paying and other financial management usually does not require any special professional training, but it does require strong ethical integrity.

Care at Home vs. Care in a Facility

One of the hardest tasks faced by individuals with increasing long-term care needs is judging whether, and when, home care no longer is possible.  Often it is the family who has to make the decision, as the individual’s cognitive condition may prevent him or her from understanding the circumstances and the options.

The options for living with long-term illness, from most-independent to least-independent, generally include the following:

  • Living independently in a house, apartment or senior housing complex, with help provided by nearby relatives, senior care ASAP’s  and area home care agencies
  • Living with a child or other relative who can provide support, often with some outside help coming in from home care agencies or day programming.
  • An assisted living facility or other group setting, where residents have separate rooms or suites but share common living areas, and support services are provided either by on-site aides or by home care agencies that come into the facility
  • Secured dementia unit within an assisted living facility that provides monitoring and prevention of wandering, with support services provided by the facility or by home care agencies that come into the facility
  • Skilled nursing facilities—nursing homes—that provide all care, including skilled medical care, on site

A Continuing Care Retirement Community (CCRC) provide all of the above settings in different parts of the facility or campus.  The individual usually must be able to live independently when they move into the CCRC.  The community will provide support at whatever level the individual may need.  If care needs become too great to be provided in an apartment, the community includes an assisted living facility and a skilled nursing facility on site.  In theory, the individual will experience less disruption in moving through different levels of care, because they will remain physically within the same community.  

A major drawback of CCRCs is the cost.  Often the individual must buy a “share” in the community in order to move in.  The cost may range from $300,000 to $1M or more.  Most facilities return 90% of the buy-in cost to the individual (or their estate) if they leave, or when they pass away.

Where to Find Home Care Services

In Massachusetts, the best place to start looking for specific home care services is the “Aging Services Access Point,” or “ASAP,” that covers your city or town.  There are 24 such agencies, covering the entire states.  ASAPs provide the following direct and protective services:

  • Information and referral 
  • Intake and assessment
  • Interdisciplinary case management
  • Development and implementation of service plans
  • Monitoring of service plans
  • Reassessment of needs
  • Investigations of abuse and neglect of elders

Often the need for home care is discovered after a medical incident that requires hospitalization and/or rehabilitation in a skilled nursing facility (nursing home).  Hospitals and nursing homes all have social workers who help with discharge planning, which often includes setting up home care.  These social workers will help the individual and family to evaluate the level of care that’s needed, identify home care resources and make referrals.

Paying for Long-Term Care

Long-term care is expensive.  Normal health insurance, including Medicare, does not cover it, other than specific therapies for a limited period of time.  Home care is not covered by health insurance or Medicare, except through specialized programs for lower-income individuals that combine Medicare with public benefits in a managed care arrangement, such as the Program for All-inclusive Care for the Elderly (“PACE”) and Senior Care Options (“SCO”), which are limited to certain geographical areas within the state.

Intermediate levels of care, such as assisted living or congregate housing, similarly are not covered by Medicare or health insurance, unless provided in certain facilities that contract with PACE or SCO.  Skilled nursing care is not covered by Medicare or other health insurance after 60 days of rehabilitation.

The Medicaid program (that’s Medicaid, as opposed to Medicare) does pay for some home care and intermediate-level care, but only if income is less than the cost of the medical care.  As the amount of care that the individual needs increases, the more likely it is that the cost will exceed income, and therefore Medicaid may be available.  For example, if the person would qualify clinically for skilled nursing care, but adequate home care would allow him or her to avoid the nursing home, Medicaid may pay for the care through the Frail Elder Waiver program.

Pooled Trusts and individual Disability Trusts can work with Medicaid, by allowing the individual to meet the $2,000 asset limit for Medicaid without spending everything on medical care first.  Pooled or Disability Trusts allow the individual to set aside any “excess” assets, in a qualifying trust that pays back the state after the individual’s lifetime. During lifetime, the trust can provide a better quality of life, by providing supplemental services that Medicaid does not pay for. 

There is little financial help for long-term care, other than Medicaid.  Long-term care insurance (“LTCI”) is available specifically to pay for long-term care, but it is nearly as expensive as the care itself.  An estimated 85-90% of Americans cannot  afford the cost of LTCI often there are limits on the payments, a waiting period and only covers a limited amount of  the cost.