In my experience, most people – including policy and decision makers – are not much aware of long term care (LTC) issues until they, or a close family member or friend, have faced the need for assistance from some one else in order to conduct their lives.  If we are lucky enough to live a long life, most of us will face some incapacity for self-care: we will not be able to shop or cook for ourselves; we will not be able to get out of bed without assistance or dress ourselves; some one else will have to assist us with bathing and hygiene; transport outside of our homes will be limited.

When that happens, where do we want to live?  Who do we want to help us?  And who answers those questions?  Do we maintain as much control as our mental and physical capacities allow over our life circumstances?  Or does someone else, including decisions made in institutional settings, make those decisions for us?

Typically, when people think of “long term care”, two images jump to mind:  that LTC is only for old, frail people and that it is only provided in nursing homes.  Fortunately, this limited vision has started to shift the past few years.  More and more people are realizing that people of any age can need assistance on an extended basis – even infants.  Additionally, there is growing recognition that most of those people needing LTC can and want to receive that assistance in their own homes for as long as possible.

Historically, our nation has funded LTC in a way that created incentives to put people in institutions in order to receive care.  A few years ago, the U. S. Supreme Court ruled in the Olmstead v. L. C. case that when medical professionals agree that a person who so desires can live in the community rather than an institution, that person must – as a matter of civil right, be allowed to live in the community.

Most people are not aware that San Francisco is a recognized leader in implementation of LTC services that have made it more possible for low-income people to move back to or continue living in their own homes.  For about a decade, San Francisco has increased City and County funding of In-Home Supportive Services (IHSS) in the independent provider mode.  What this means is that the wages and benefits of people who want to be IHSS home care workers have improved, making it possible for IHSS consumers to find people to hire to assist them in their own homes – including family and friends.

The fundamental message here is that a greater proportion of our population will likely need LTC in the future, and cost-effective provision of personal assistance workers in the home or community, hired and supervised by the user of LTC, is an excellent way to meet this growing need.

In brief, the kinds of policies that promote this fundamental goal are:

Providing not only affordable, but accessible housing for people with disabilities of any age.  Obviously, it is impossible to assist someone in their home if they don’t have one.  In a region of the nation that is known for being the birthplace of the “independent living movement” for people with disabilities, there is an incredible lack of accessible housing available in San Francisco.  Geography contributes to the City’s challenges – hills and stairs are not conducive to people with mobility limitations or who use wheelchairs to get around.  But even a relatively sizable investment in stair lifts, for example, can save money in the long run, because nursing facility care averages about $100,000 per year in San Francisco.  Delaying use of a nursing facility for even a few months can save significant amounts of money.  Not to mention the fact that most people fare better when they are in their setting of choice – usually their home.  

When group housing is provided, funds for support services in that setting need to be assured.  Social workers on site or other knowledgeable people can help residents line up assistance such as personal care from a home care worker, meals, transportation or adult day care.

Supporting as large a number of social-service based “assisted living” units as possible as part of the Laguna Honda Hospital rebuild.  Prior to the final wording and ultimate passage of the LHH rebuild bond, there was much discussion within the progressive LTC service community about the terms under which they could support a large rebuild.  Part of the support from that sector was because of a commitment to building “assisted living” on the LHH site, allowing persons capable of an independent life – unfettered by the needs of institutional routine – to live in a non-hospital setting.  This commitment must be kept and put on as fast a time-table for construction as possible.

Supporting changes to standards for determining eligibility for publicly funded programs.  Levels of income and assets now in use were set in the 1960s.  People must be very impoverished to be eligible for IHSS or Medi-Cal.  An individual may not exceed either about $800 a month income or $2000 in assets or cash savings.  These levels are totally unacceptable in the current economy – especially the asset level.  Such low eligibility requirements make it impossible for a person to even save enough for first and last month’s rent. 

Through wage and benefit increases, assuring a large and diverse enough pool of home care workers and personal attendants so that people with disabilities will be able themselves to hire and supervise those who work for them in their own homes.  While the Governor continues to propose financial limitations to IHSS, San Francisco has continued to increase its support above required minimums.  Currently, IHSS independent home care providers (independent providers are employed by the IHSS consumer, not an agency) take home $10.95/hour, and if they continually work for 25+ hours per month, may enroll in both comprehensive health and dental coverage for less than $10/month.  This is an incredibly cost-effective program and is credited with keeping many people out of nursing homes, which on average are reimbursed with public dollars at about five times the average cost of IHSS.

Understanding that it is often cost-effective for public dollars to pay family members to provide assistance.  IHSS is quite unique in that it allows consumers to hire family and friends.  Paying family members to provide IHSS services keeps family units together, because this household income makes it more possible for parents of young children with severe disabilities especially, to quit more lucrative positions and stay home to care for their children rather than institutionalizing them at a cost of at least $250,000/year.

Increasing opportunities for people with disabilities who want regular employment.  As a group, people with disabilities are proportionately higher in unemployment status and poverty level.  This is unacceptable.  Many people with disabilities have contributions that could be made in the work place and barriers to their ability to find good jobs should be removed.

Further explication of all these issues can be found at:

Center for Personal Assistance Services

Paraprofessional Healthcare Institute

National Clearinghouse on the Direct Care Workforce

Quality Care Through Quality Jobs

San Francisco: In-Home Supportive Services Public Authority