Long Term Care Changes Put the Power in Your Hands

Once upon a time, being elderly or having a disability that affected your ability to care for yourself meant you were forced to enter a nursing home. Since the end of the twentieth century, there has been a shift in how Long Term Services and Supports (LTSS) are delivered. The movement has gone from institutional, to homelike (in a nursing facility), to the home (of the participant). It’s swung from a focus on individualized care to personalized care. And now there are not only personalized options for long term care, but participants (you!) can actually direct their own care.

In Colorado, this new model is called participant directed programs. Other terms for it include consumer-directed programs, self-directed services, or even veteran-directed services (veterans directing their own home health care services through the VD-HCBS program).

This article looks at how trends in long term care have changed for people with disabilities. Once you understand where we have been, you can better appreciate the value of participant directed programs.

Long Term Care: From Institution to Homelike

Prior to the 1960s, and especially in the early twentieth century, the concept of ‘home’ was not part of a nursing facility (and prior almshouses) environment. Facilities were most often places people in their final stage of life would be placed. An environment of impending death was more the norm than a focus on life.

The 1960s brought civil rights to the forefront of Americans’ minds. Social climate became favorable for people with disabilities to gain and assert civil rights in a way that hadn’t yet been possible. Society started to see that people with disabilities are capable of and deserve to be able to live a productive and meaningful life.

With this increased sense of value on the lives of people with disabilities, the 1980s brought societal and legislative changes. A change in nursing home care accompanied this. Nursing facilities were becoming less hospital like (focused on end of life) and more homelike (focused on living life).

From Nursing Home Care to Home and Community Based Services (From Individualized Care to Personalized Care)

Nursing homes have come a long way from being the strictly medical institutions they used to be (similar to hospitals). And they are much more homelike and comfortable then they ever have been. (Hooray!) But because of their limitations, they still give individualized care, not personalized care.

Care in a facility can be individualized, but it cannot be personalized. The area in which this is most visible is timing of care. Because staff need to be efficient to attend to all residents, care is timed on the facility’s schedule, not on your schedule. Nursing facilities still operate on the concept of ‘rounds.’ To increase efficiency, nursing home staff make their rounds to care for patients at the same times each day. If you live in a nursing home, you may ring for assistance outside these times, but the rounds times will not be changed to meet your needs.

Another area where personalized care in a nursing facility is not feasible is caregivers. In nursing facilities, you cannot make personal requests to have caregivers hired or fired, or even specify which caregivers you would like to attend to you on a given shift.

The 1990s started a trend from individualized care to personalized care. People were seeking LTSS personalized to their needs and lifestyles, not limited to what nursing facilities could or couldn’t provide.

Bringing Care to Your Home Instead of Bringing You to the Care (Nursing) Home.

In particular, the 1990s brought about the Medicaid Home and Community Based Services (HCBS) waivers. This shift was all about bringing care to the individual’s home instead of bringing the individual to the care (nursing) home.

Many people with disabilities are now able to receive nursing facility level of care in the comfort, safety, and privacy of their own homes. HCBS Waivers and other funding alternatives have made personalized home health care services accessible more than ever before.

Inside your home, your care goes from individualized to personalized. With no other patients, or staff efficiency needs, there is just you to be cared for. Your home health care can be personalized to your needs.

From Traditional Directed Home Health Care to Participant Directed Home Health Care

Riding on the trend from individualized to personalized LTSS, comes the newest positive change. It’s a big deal. It makes the participant (you!) the director of your care.

In the 1980s and 1990s, LTSS delivery was largely in the hands of home health provider agencies. (It’s still the most common model.) However, now we have available Participant Directed Services in Colorado. Participant Directed Services means you can actually choose your own caregivers and hire and/or train them for your own care (depending on the specific model).

This concept is not new. It was pioneered in the 1970’s by the Independent Living Movement. However, it’s only since the 1990s that Participant Directed Services have been included as a model in Medicaid Waivers and become available more widely in Colorado.

Participant Directed Services Are Participant Centered

Woman and her daughter sit closely and look out a sunny window togetherMore control over your healthcare is in your best interest. Not only do you generally know more about your own needs, but you are generally more motivated than someone else to ensure the care you receive meets your needs. When you are the director of your care, you can choose and/or hire caregivers to meet your own home health needs, as determined by you. This puts your care squarely in your hands (or in the hands of a designated representative). Your care truly becomes “participant centered” this way—centered around you.

Become the Employer and/or Choose the Caregivers You Hire

With some Participant Directed Service plans, you become the employer of your home health providers. It is no longer even the agency who is the employer. Other plans still have the agency as employer but you can choose who is hired. Consider how empowering it is to no longer be viewed as a patient or a client first, but to be viewed by your care provider as the employer and/or the trainer of your own care needs.

Work With a Home Health Agency in a Way You Direct

This means anyone who is qualified can be hired for your care! This could be someone already employed by an agency but it could also be a friend, a community member, or a family member. In fact, many times caregivers who are family members can now be hired and paid for the care they give.

With Participant Directed Services, the network for care providers opens up. When your potential caregiver pool is not restricted to providers employed by home health agencies, more people can be considered as potential caregivers to be employed. In regions where there are limited caregivers employed by home health care agencies, this is especially helpful.

Participant Directed Services empowers you as the participant to direct your care and work with a provider agency in a way that you direct. It takes a working relationship with a home health agency to a new level.

Benefits of Participant Directed Services for Home Health Care in Colorado

As you can see, the benefits of participant direction give you:

  • Increased choice and flexibility in choosing providers and services,
  • More control over planning and scheduling home health care services,
  • Direct oversight in making sure your needs are met,
  • Direct employment authority over home health workers and caregivers, and
  • Increased control over the type and quality of the supports you receive.

Colorado has three main Participant Directed models of service delivery for LTSS available within some HCBS Waivers and programs.

They are:

  • In-Home Support Services (IHSS),
  • Consumer-Directed Attendant Support Services (CDASS), and
  • Veteran-Directed Home and Community Based Services (VD-HCBS)

We will look at IHSS and VD-HCBS in detail in next articles. The Independence Center provides home health care guidance and services for the IHSS and VD-HCBS Participant Directed models.

The Independence Center Can Help

The Independence Center (The IC) is a home health agency in Colorado that provides both Traditional Directed Services and Participant Directed Services, including Veteran Directed services. Not only does The IC provide LTSS, but it can help you navigate the system for obtaining LTSS. If you have any questions, please contact our Home Health Office Administrator at 719-471-8181, ext. 130.