Category Archives: The IC Blog

Get Paid to Be Caregiver for Spouse or Family Member in Colorado

Marine veteran Cpl. Richard Stalder smiles with sunglasses on and looking at the camera while seated in his wheelchair outside on a sunny day with his archery kit. He is accompanied by his mother, who is standing to his left, with sunglasses on and looking at him.

“There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” These words are perhaps the most profound truth about caregiving, and they were spoken by former First Lady Rosalynn Carter.

Rosalynn understood caregiving because she cared for her father before he passed away when she was 12 years old. After he passed from leukemia, she helped her mother care for her three younger siblings. After leaving the White House, Rosalynn helped care for President Carter’s three siblings (who all passed away from cancer) and her own mother.

There was something else Rosalynn understood: not all caregivers realize they are caregivers. “People don’t want to admit that they are caregivers. They feel it is just their responsibility to care for a mother or a grandmother.”

The first step to receiving much-needed support lies in being able to self-identify as a caregiver. Once you are able to accept and articulate this, it opens the door to be able to ask for and receive help.

Rosalynn herself laughed when she admitted, “I didn’t realize I was a caregiver until I got involved in this work.”

How Do I Know If I Am a Caregiver?

Family Caregiver Alliance defines a “caregiver” as “a spouse, partner, family member, friend, or neighbor involved in assisting others with activities of daily living and/or medical tasks.” Anyone who is caring for a loved one with a disability, or who is elderly or chronically ill is a caregiver. It doesn’t have to be full time. Although, in many cases, caregiving is 24/7 work.

No matter full or part time, caregiving takes a toll. The burden of caregiving can greatly impact the following areas: financial, friendships and family life, physical and mental health, and a caregiver’s job or career.

Financial Impact of Caregiving

The financial impact of caregiving is mentioned first, because the financial hit can be the most devastating to all areas of life for the caregiver. Not only do caregivers often have to give up jobs or careers, or take reduced hours at work, but caregivers end up spending money for their loved one’s care as well.

In this article, we’ll look at one major way of alleviating financial stress in caregiving: becoming a paid caregiver for your loved one.

If I Get Paid for Caring For My Loved One, Doesn’t this Diminish What I’m Doing?

The question of payment for doing what one already considers a duty or display of love is a valid one. For instance, parents can sometimes feel uneasy about receiving payment to care for a disabled child. Spouses will often feel like receiving payment for showing love through care may not be right. The answer to this lies in the perspective. How about this for perspective: in many ways, receiving payment for caregiving elevates caregiving. It’s an acknowledgment of the work and the sacrifice you are performing. I remember words my real estate agent Brian Boals told me when I wanted to sell my house: “People pay for value.” And in caregiving, as with all things, people do pay for value.

AARP’s Public Policy Institute found in 2015 the value of home care services performed by informal caregivers was $470 billion in 2013. That $470 billion was actually larger than the entire national spending on paid home care and Medicaid spending combined for 2013. Interestingly enough, the institute titled that report “Valuing the Invaluable.”

As a caregiver, you are performing an invaluable service and it deserves to be valued.

Which Programs Pay for Family Members and Spouses to Become Caregivers

This leads us to the question: “How do I get paid for being a caregiver in Colorado?” It doesn’t have a simple single answer, but we’re going to look at a few home health service delivery options in Colorado that your loved one might qualify for.

In Home Support Services (IHSS)

Family, friends, and spouses may be able to be hired as a caregiver under Colorado’s IHSS delivery model for home health care. IHSS is available under certain Medicaid HCBS Waivers.

The Independence Center is a home health agency that supports IHSS and is actively hiring qualified spouses and loved ones as caregivers. For instance, the Molinar family is thriving since Kim Molinar was hired by The Independence Center as a caregiver for her husband. We’re very proud of them.

Click here to read more information about IHSS from The Independence Center.

Consumer Directed Attendant Support Services (CDASS)

Colorado’s Consumer Directed Attendant Support Services (CDASS) is another Participant Directed service delivery model similar to IHSS. The primary difference is participants on CDASS do not work with a home health agency.

Click here to go to Colorado.gov’s helpful information page about CDASS, including how to apply.

Veteran Directed Home and Community Based Services (VD-HCBS)

Marine veteran Cpl. Richard Stalder smiles with sunglasses on and looking at the camera while seated in his wheelchair outside on a sunny day with his archery kit. He is accompanied by his mother, who is standing to his left, with sunglasses on and looking at him.

Marine veteran Cpl. Richard Stalder, a native of Muenster, Texas, is a wounded warrior competing in archery, cycling and shooting during the 2014 Marine Corps Trials on Marine Corps Base Camp Pendleton, Calif., March 4, 2014. Stalder’s mother, Claudia Stalder, became his primary caregiver following his diagnosis. (U.S. Marine Corps photo by Cpl. Lisette Leyva/Released)

Caregivers of veterans face unique challenges, and can benefit from VA benefits the veteran receives. Another Participant Directed service delivery model is the Veteran Directed Home and Community Based Services (VD-HCBS), which is a VA benefit.

If you care for a veteran who resides in the Pikes Peak region, including El Paso, Park, Elbert, Kiowa, Teller, Kit Carson, Cheyenne, or Lincoln counties, your loved one may be eligible for The Independence Center’s Veteran In Charge program.

Receive Caregiver Support through The Independence Center

Even if your loved one with a disability doesn’t qualify for any of the above programs, it’s still important for you as a caregiver to actively seek support for yourself. Without active support, the toll of caregiving can wreak havoc with your health and stability.

One avenue of support is respite care. Respite care is designed to give caregivers a break. Click here for a guide to respite care in Colorado.

Other types of support can be found in support groups, classes, and even online courses like the caregiver course specifically for caregivers of people with dementia provided by Catherine Hammond of Hammond Law Group in Colorado Springs. Hammond Law Group is known for helping families in Colorado prepare and act in case of a family member’s disability.

The Independence Center is here for you and can help you access caregiver support and resources. We can also help you navigate the Long Term Services and Supports (LTSS) system in the Pikes Peak region. Please call us at 719-471-8181.

Veteran Directed Home and Community Based Services (VD-HCBS) in Colorado

If you’ve read Stephen Ambrose’s book Band of Brothers or seen Steven Spielberg’s and Tom Hank’s HBO miniseries production of that story, you’re familiar with the person and character of Cpt. Herbert Sobel. Sobel served nine years in the U.S. military, was a member of the 101st Airborne Division and the famed volunteer-based Easy Company, 506th Parachute Infantry. Regardless of what you think about his infantry training and leadership skills, the last decades of his life were tragic.

Herbert Sobel attempted suicide by shooting himself through the temple in 1970. He survived the attempt, but the bullet passed behind his eyes, severing the optic nerves. He experienced complete blindness for the remaining 17 years of his life. Herbert Sobel spent his last 17 years in a VA nursing home, where he died of malnutrition in 1987. No funeral was held.

If you know the Band of Brothers account, Sobel was not remembered well by the soldiers under him. However, no veteran should suffer a demise such as Sobel’s. And while VA nursing homes have come a long way since the 1980’s, there are now options for veterans to receive homemaker, personal care, meal delivery, transportation, and health related goods and services in their own homes.

Home and Community Based Care As an Alternative to Institutionalization for Veterans

A lot has changed for the better on the Long Term Services and Supports front since the 1980’s. Veterans at risk of nursing home placement are now able to access these services and supports in the comfort of their own homes for as long as possible. Traditional home health agency services are a good option. Those services are all decided on and managed by the agency.

However, many veterans would prefer to have control over their own home health care, and with the new participant-centered model of home health care service delivery, you can. I’m talking about the arrival of Veteran Directed Home and Community Based Services (VD-HCBS) in Colorado.

Specifically, if you’re in the Pikes Peak region which includes El Paso, Park, Elbert, Kiowa, Teller, Kit Carson, Cheyenne, or Lincoln counties, you may be eligible for The Independence Center’s Veteran In Charge program. Veteran in Charge program is one of Colorado’s top VD-HCBS programs because The Independence Center is all about advocating for your right to have choice, control, and independence if you have a disability. Click here to read the success story of how The Independence Center’s Veteran in Charge program came into existence.

What ‘Veteran Directed’ Means

Veterans enrolled in VD-HCBS have more control than participants of traditional home health service delivery over which mix of goods and services they need to keep them living independently in their own homes. No matter your age, if you meet qualification criteria for the program, you are given a flexible monthly personal budget with which to purchase goods and services, including hiring of caregivers. You are in charge of who you hire, as well as training and scheduling of your home health caregivers. You are allowed to hire family members (including spouses) or friends to provide these home care services.

How the Program works

Graphic with soldier in the center representing Veteran or veteran representative and showing 8 boxes with the following information: makes budgeting decisions & sets salary for caregivers, hires and dismisses caregivers, sets tasks for caregivers, trains and schedules caregivers, determines good and services needed, keeps time sheets and other employment records, receives support from options counselor, and works with Financial Management Service provider
To get started, contact your Colorado VA social worker, who will determine your eligibility for the VD-HCBS program. If you don’t have a social worker, you can contact the main Rocky Mountain VA social work line at 720-723-3018.

Once your eligibility has been determined, the VA program coordinator will orient you to the program. The VA will then give you a referral to either the local Area Agency on Aging, Aging and Disability Resource Center, or Center for Independent Living. In the case of the Veteran in Charge VD-HCBS program in the Pikes Peak region, The Independence Center is the Center for Independent Living that you will be referred to. There, you’ll receive an options counselor who will work with you to develop a personalized service plan with the goal of keeping you independent in your home for as long as possible. The counselor at The Independence Center is called a Veteran Coach. Your counselor will provide an in-home assessment and will help you with care and service planning.

Through a collaborative effort between you, your counselor and the VA medical center, a monthly budget and plan for home health care expenses and services will be authorized by the VA. With VD-HCBS, you are not confined to typical home health care service packages. You can completely customize your services to your needs.

If you need help finding a caregiver, your counselor will assist with that. The counselor will also arrange for a Financial Management Services (FMS) company to help with the financial side of things. Your counselor/coach will be there for ongoing support for both you and your caregiver(s), so you never have to go it alone.

With VD-HCBS, you become the employer for your home health caregiver(s). The FMS will prepare paychecks for your home health caregiver(s), tax returns, and other payroll documents. Payments to caregivers are authorized by the veteran and the FMS. Your counselor and the VA coordinator will help identify other VA benefits that can help you live independently. The VD-HCBS program does not allow duplication of other VA benefits.

Types of Goods and Services You Can Receive With VD-HCBS

With the goal of keeping you out of a nursing home for as long as possible, VD-HCBS gives you a VA authorized budget with which to purchase the following types of services:

  • In-home personal care such as assistance with bathing and toileting
  • Homemaker services such as laundry and housekeeping
    Chore and maintenance service such as yard and snow removal
  • Health maintenance costs such as dietary counseling or massage therapy
  • Caregiver education, training, and support
  • Home modifications such as bathroom grab bars and wheelchair ramps
  • Adult day care
  • Nutritional services prescribed by a doctor or dietician
  • Respite care to relieve caregivers
  • Assistive or monitoring devices
  • Environmental support
  • Grocery and/or meal delivery
  • Transportation for socialization or medical appointments
  • Emergency response system

How To Qualify for Veteran Directed Home and Community Based Services (VD-HCBS)

To qualify for the VD-HCBS program you must:

  • Be enrolled in Veterans Health Administration. If you are not already enrolled in Veterans Administration Health Care (VAHC), click here to find out if you are eligible for VAHC and how to apply.
  • Meet eligibility criteria that show you are at risk of nursing home placement. Typically this means that you require assistance with at least three activities of daily living, although there can be other criteria like cognitive impairment or needing hospice.
  • Be interested in and able to manage your own care or able to appoint someone who can direct your care on your behalf
  • You must live at home or with a loved one or in an independent living facility that does not offer home care support

Why Choose The Independence Center’s Veteran in Charge VD-HCBS Program

As a Center for Independent Living, The Independence Center (The IC) is designed to be an advocate for people with disabilities and their caregivers and families. This means we are always advocating for independence, choice, and control in your own life and health care.

The Aging and Disability Business Institute has this to say about The IC’s Veteran in Charge program:

“The IC’s experience in disability and independent living services, self-advocacy and consumer direction positions them to operate a successful VD‑HCBS program….

Ultimately, building relationships with veterans within the program is at the heart of the success. These relationships are nurtured at every step of the process….

The IC invested time to ensure the best structure and foundation to administer their Veteran In Charge program. Building relationships with the Denver VAMC was critical for the launch and the ongoing success and growth of the program. The IC leadership reached out to other VD-HCBS sites to ask for recommendations and lessons learned before launching the program and the insights shared from experienced peers proved invaluable. Additionally, The IC dedicated substantial time to researching various Financial Management Service (FMS) agencies, an integral partner in the VD-HCBS program (FMS agencies are third-party entities that assist veterans with managing their self-direction budgets and can help with various employment responsibilities).”

Click here to read more here about why The IC is so well-equipped to be your VD-HCBS provider.

To learn more about The Independence Center’s Veteran in Charge Program, call us at 719-471-8181.

In-Home Support Services (IHSS) in Colorado

Older woman with a disability in electric wheelchair smiles and talks with a woman sitting near her on the bed.

Introduction to In-Home Support Services (IHSS)

I’m about to give you the good news about In-Home Support Services (IHSS) in Colorado. The good news is IHSS is available in Colorado if you’re on certain Medicaid Home and Community Based Services (HCBS) Waivers.

If you’re not sure what IHSS is, read on. All the basics are covered in this article, including definitions, qualifying information, and helpful links to other articles.

In my last article we looked at trends in Long Term Services and Supports (LTSS) and how Participant Directed Programs have become available in Colorado. ‘Participant Directed’ refers to how typical LTSS services are accessed and managed. This is in contrast to what is known as Traditional Directed, or Physician Directed care. You, as participant, can now select your own caregivers and direct your own care.

One of these progressive models that allows you to direct your own home care is In-Home Support Services (IHSS).

What is In-Home Support Services (IHSS)?

IHSS is a participant directed service delivery model for people with disabilities who qualify for Home and Community Based Services (HCBS) Waivers. It is not a specific public health program. IHSS refers to the way you as a participant already on an HCBS Waiver can manage your own home health care.

IHSS has to do with the way home health care services are accessed, delivered, and managed. Instead of a physician being the director of your care, you become the ‘boss’. IHSS has been approved by Centers for Medicare & Medicaid and allows you to direct your own in-home care under the authority of a participating home health agency.

Even if your health is unstable, if you are able to direct and manage your own care (or have an Authorized Representative of your choosing do it), IHSS may be a good option for you.

Which services qualify as In-Home Support Services (IHSS)?

Colorado statute defines IHSS as “services that are provided by an attendant and include health maintenance activities, support for activities of daily living, personal care services… and homemaker services.”

Personal care services are those services like assistance with brushing teeth, bathing, using the restroom, meal preparation and medication reminders.

Homemaker services include household chores and light housework, like grocery shopping and meal preparation.

Health maintenance services are those medically skilled care services such as IVs, feeding tubes, catheter irrigation, enemas, suppositories, and wound care.

Older woman with a disability in electric wheelchair smiles and talks with a woman sitting near her on the bed.

“Minister Hoffman Homecare Budget02.JPG” by Ian Jackson for Government of Alberta is licensed under CC BY 2.0 https://creativecommons.org/licenses/by-nd/2.0/legalcode

Who Hires the Caregiver and Who Employs the Caregiver?

Under IHSS, as participant, you can select who you want to be your caregiver (including your spouse!), and the home health agency you are working with becomes the employer and does the actual hiring, not you.

If you don’t have a home health worker in mind, the agency can help you find someone. With the traditional agency model, the agency hires who THEY want. With IHSS, you select who the agency hires or can choose to utilize an agency caregiver. The agency along with the participant will help train the caregiver to personalize the care.

IHSS is available to qualified participants on the following three HCBS Waivers:

Are spouses allowed to be hired under IHSS in Colorado?

Since 2016, Colorado now allows spouses to be hired as caregivers by a home health agency. Prior to 2016, spouses were not allowed to be reimbursed for care under IHSS. The Independence Center is a home health agency that is actively hiring and training spouses for home care.

One of the biggest perks of being hired as a spouse to care for a spouse with a disability is the benefits that come as a paid employee. Paid employees of a home health agency could be eligible to receive any benefits available, such as health and dental insurance, 401(k), and paid time off.

How Does the Agency fit into IHSS?

IHSS is participant directed care. However, the agency still is the employer (not you) and is responsible for oversight, hiring, training, providing backup services, and nursing supervision. The agency also oversees your care budget and manages payroll for your caregiver(s).

You, as participant, work closely with the agency and your case manager to determine which services and supports you need.

Nurse Practice Act Waived Under IHSS

IHSS contains a valuable provision related to the Nurse Practice Act in Colorado. Tasks that are reserved for skilled nurses (RN or CNA) but that don’t require the clinical judgment of a nurse are allowed to be performed by a home health care worker that is not a nurse. In essence, under IHSS the Nurse Practice Act is waived.

The home health agency through which the IHSS services are being delivered will assess the caregiver’s ability to perform such tasks. This results in considerable cost savings as well as convenience to the participant. By having the the Nurse Practice Act waived, you can receive care from your loved ones, and those family members or friends can be paid for giving care.

For instance, a mother who is employed by the IHSS agency as caregiver for her daughter can perform such tasks without having an additional outside worker come in for the tasks.

Getting Involved with IHSS Policy

Are you an IHSS participant and want to give input into the state administration of IHSS? Consider attending the Participant-Directed Programs Policy Collaborative (PDPPC), which is a joint collaboration between participants and the Colorado Department of Health Care Policy and Financing. Attendance at these monthly meetings is also possible via conference call. For more information including meeting dates and conference call dial-in, click here.

The Independence Center Can Help

Do you have questions about whether IHSS may be right for you? The Independence Center is not only a home health agency with expertise in IHSS, but it is a Center for Independent Living. As such, it advocates at the local and state level for continued increase in quality of life for people with disabilities. If you are considering IHSS, talk to us. We can help you navigate the ins and outs and support you in your decision. Contact our Home Health Office Administrator at 719-471-8181, ext. 130 with questions about IHSS or other participant directed programs.

Participant Directed Services for Home Health Care in Colorado

Woman and her daughter sit closely and look out a sunny window together

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.

History of Long Term Services and Supports in Colorado

We have a lot going for us in Colorado when it comes to the quality and access of long term services and supports (LTSS). Colorado actually ranks eighth in the nation,  according to the AARP Long-Term Services and Support Scorecard! Colorado is also one of only a few states that uses Medicaid dollars to serve more individuals needing LTSS through home and community based services (HCBS) than nursing facilities.

With this in mind, let’s look at the history of LTSS in Colorado. Here are the landmark highlights of federal and state events that paved the way for access to quality LTSS in Colorado.

1929 – 1939
The Great Depression

The impact of The Great Depression was experienced long after the actual economic downturn between 1929 – 1939. Because many of the elderly population experienced extreme poverty during this time, various pension schemes were introduced.

Black and white photo of Dr. Townsend at a desk with an NBC microphone

Townsend c. 1939, Harris & Ewing [Public domain], via Wikimedia Commons

The most influential of these schemes was the Townsend Plan, started by a 66 year old doctor named Francis E. Townsend. Dr. Townsend was disturbed when he witnessed three elderly women looking for food in a trash can. He proposed a plan that every American over age 60 be provided a federal pension of $200 monthly. At one point there were over 2.2 million Americans who considered themselves Townsend Plan club members who were actively working to make The Townsend Plan the old age pension system of the American government.

1934

As a response to the economic impact of the Great Depression, Franklin D. Roosevelt set up the Committee on Economic Security to study the matter of a federal old age pension system for America. The committee produced a report, which recommended legislating old age and unemployment benefits, as well as public health, child and maternal health programs, and aid to dependent children. The report did not recommend benefits for people with disabilities but it did mention the issue of illness by stating, “illness is one of the major causes of economic insecurity,” and “one-third to one-half of all dependency can be traced to the economic effects of illness.”

1935

President Roosevelt signs the Social Security Act

President Roosevelt signs the Social Security Act: Social Security Online [Public domain], via Wikimedia Commons

After considering the recommendations of Franklin’s committee, congress passed the Social Security Act. President Roosevelt signed it into law on August 14, 1935. The act provided old-age benefits funded by payroll taxes. The means-tested welfare program was intended to bring immediate relief to families affected by the Great Depression. The old-age insurance program was not designed for immediate relief—first payments were not scheduled until 1942. The final bill included public assistance for people of advanced age, for dependent children, and for people with blindness.

1942-1945

Public programs for LTSS were not included in the original Social Security Act except for aid to people with blindness. However, it was an ongoing topic of concern in America, due to huge financial losses experienced in the private disability insurance sector. With America entering into World War II, Roosevelt created a program to help civil defense workers who became disabled while working. This was called the Civilian War Benefits program and it paid partial, full, temporary and permanent disability benefits.

1948

Color photo of Lyndon Johnson signing Medicare bill, with Harry Truman

Lyndon Johnson signing Medicare bill, with Harry Truman, July 30, 1965, White House Press Office [Public domain], via Wikimedia Commons

While not funded immediately, the Advisory Council on Social Security to the Senate Finance Committee recommends disability benefits for disabled workers.

1950

The Social Security Act Amendments of 1950 created the Aid to the Permanently and Totally Disabled (APTD) program.

1965

President Lyndon B. Johnson signed the Social Security Amendments into law, which approved Medicare and Medicaid, on July 30, 1965.

1972

Black and white photo of Ed Roberts, disability rights champion

Edward V Roberts, Unnamed DOR Employee [Public domain], via Wikimedia Commons

Congress passed a law that enabled qualified individuals under the age of 65 with end-stage renal disease to enroll in Medicare, which until that time was strictly an age-based program. This was groundbreaking because it was the first time a medical condition could qualify someone for Medicare.

1972 was also pivotal as Ed Roberts, who was the first student with significant disabilities to attend UC Berkeley, founded the Berkeley Center for Independent Living (CIL). CIL is a nonprofit that advocates for people with disabilities. Ed is widely recognized as the father of the independent living movement.

1975

The forerunner to today’s Individuals with Disabilities Education Act (IDEA) was enacted by congress. The purpose of this law was to protect the education rights and meet the education needs of children with disabilities.

1980

The Omnibus Budget Reconciliation Act of 1980 expanded the home health care benefit of Medicare

1981

Section 1915(c), an amendment of The Social Security Act of 1981, established Medicaid home and community based (HCBS) waivers which allowed for LTSS to be provided at home and at intermediate levels of care instead of strictly nursing home settings.

1983

Colorado implemented the first HCBS Waiver: Home and Community-Based Services for the Developmentally Disabled (HCB-DD). Colorado was one of the first states ever to implement a LTSS waiver. 1983 was also the year that the Colorado Indigent Care Program (CICP) was established to reimburse physicians and other providers for serving uninsured, indigent individuals.

1985

Colorado implemented the Elderly, Blind and Disabled waiver (EBD)

1987

The Omnibus Budget Reconciliation Act of 1987, signed by President Reagan on December 22nd, legislated new quality controls and penalties for nursing homes, including training requirements for nurses aides. (The Independence Center CNA Training Program utilizes these training requirements and more.) The law also required the Department of Health and Human Services to establish training standards for employees of home health agencies. Annual home health agency assessments, including home visits became required. This law was pivotal for people receiving home health care; it guarantees home health care patients/clients receive the same rights as those in nursing homes. This includes the right to be informed in advance of any treatment, to be involved in planning their own care, and the right to voice grievances.

1987 was also the year The Independence Center was founded, as Southern Colorado’s disability resource center and home health provider.

1990

President Bush signs the Americans with Disabilities Act on the South Lawn of the White House. Sharing the dais with the President and he signs the Act are (standing left to right): Rev. Harold Wilkie of Clairmont, California; Sandra Parrino, National Council on Disability; (seated left to right): Evan Kemp, Chairman, Equal Opportunity Commission; and Justin Dart, Presidential Commission on Employment of People with Disabilities. Mrs. Bush and Vice President Quayle participate in the Ceremony.

President Bush signs the Americans with Disabilities Act on the South Lawn of the White House. Sharing the dais with the President as he signs the Act are (standing left to right): Rev. Harold Wilkie of Clairmont, California; Sandra Parrino, National Council on Disability; (seated left to right): Evan Kemp, Chairman, Equal Opportunity Commission; and Justin Dart, Presidential Commission on Employment of People with Disabilities. 26 July 1990 Photo credit: George Bush Presidential Library and Museum. Executive Office of the President of the United States [Public domain], via Wikimedia Commons

Congress passes the Americans with Disabilities Act (ADA), a civil rights law passed by the senate in 1989, protecting Americans with disabilities from discrimination in five key areas of public life. President George H.W. Bush signed the act into law on July 26, 1990.

1990 was also pivotal for Colorado’s children. It was the year Colorado implemented the Children’s HCBS waiver. Legislation that created the first insurance program for low-income, non-Medicaid children in Colorado was also passed in 1990. It was called Colorado Child Health Plan (CCHP),

1991

Total Longterm Care was founded in Denver, Colorado. It was one of the first nationwide Medicare and Medicaid funded Programs of All-Inclusive Care for the Elderly (PACE).

1991 was also the year Colorado legislated the beginning of the Single Entry Point (SEP) system for LTSS. The SEP is a single access point within a geographical area where individuals with disabilities, advanced age, or certain conditions can be screened for LTSS. SEPs provide case management and intake functions. Prior to the SEP system, Colorado operated on a county-based system. The SEP system allows for greater quality assurance because Colorado’s Department of Health Care Policy and Financing has contractual relationships with the SEPs.

1994

Colorado implemented the Persons Living with Aids waiver. (This waiver expired in 2013.)

1995

Portrait of Governor Roy RomerColorado implemented the Persons with Brain Injury (BI) waiver.

1996 Colorado implemented Children’s Habilitation Residential Program (CHRP), Children’s Extensive Support (CES), and Supported Living Services (SLS) waivers. See all state waivers here.

1996 was also the year Colorado state legislature voted to withdraw from the federal Medicaid program due to spiraling Medicaid costs and a taxpayer bill of rights (TABOR) that capped state spending increases at 6%. Governor Romer vetoed the legislation.

1997 Children’s Health Insurance Program (CHIP) was established as a federal-state partnership administered by each state to provide health insurance to children who don’t qualify for Medicaid or have access to other forms of insurance.

The Balanced Budget Act of 1997 establishes the Program of All-Inclusive Care for the Elderly (PACE) model as a permanent Medicare and Medicaid program.

1999

Lois Curtis, the plaintiff in Olmstead v. L.C., (center) presents President Barack Obama with a self-portrait of herself as a child that she painted.

Lois Curtis, the plaintiff in Olmstead v. L.C., (center) presents President Barack Obama with a self-portrait of herself as a child that she painted. Joining them are, from left, Janet Hill and Jessica Long, from the Georgia Department of Labor, and Lee Sanders, of Briggs and Associates. The Oval Office, 20 June 2011; Official White House Photo by Pete Souza [Public domain], via Wikimedia Commons

The U.S. Supreme Court’s ruling in Olmstead vs. L.C. found that states are obligated to make sure people with disabilities are not forced to remain institutionalized if home and community based care can appropriately meet those needs. The basis of this decision is the ADA; the court found that undue institutionalization is a form of discrimination against people with disabilities.

2001

Colorado’s Health Care Task Force, established by the General Assembly, recommended expansion of the PACE project and creation of In-Home Support Services (IHSS), among other initiatives.

2002

Colorado implemented the Community Mental Health Supports (CMHS) waiver

SB 02-027 was signed by Governor Bill Owens, which created participant directed options for LTSS: In-Home Supportive Services (IHSS) and Consumer Directed Attendant Support Services (CDASS).

Governor Bill Owens, 2002 Ariarmstrong CC BY-SA 4.0 from Wikimedia Commons

2003

Centers for Medicare & Medicaid Services approves Colorado participant-directed CDASS and IHSS programs. The participant-directed programs then became available to participants on the Elderly, Blind and Disabled (EBD) and the Children’s HCBS (CHCBS) waivers in 2004.

2006

Colorado implemented Children with Autism Waiver (which expired 2018).

2007

Colorado implemented Children Living with Life-Limiting Illness waiver.

2014

IHSS becomes available to participants on the Spinal Cord Injury (SCI) Waiver when Colorado HB 14-1358 is passed.

2017

Colorado ranks 8th in the United States for quality of care and access to long term services and supports. The AARP’s Foundation Scorecard projects the following Impact of Improved Performance (Quoted directly from the Scorecard):

“If Colorado improved its performance to the level of the average of the top-five-performing states,

  • 158,480 more place-based subsidized units and vouchers would be available to help low-income people with LTSS needs afford housing;
  • 40,203 more people of all ages would receive Medicaid LTSS to help them with daily activities;
  • 12,040 more home health and personal care aides would be available to provide care in the
    community;
  • 7,837 more low-/moderate-income adults with disabilities would have Medicaid coverage;
  • $134,700,000 more would go to home-and community-based services instead of nursing homes.”

Conclusion

Continued advocacy will enable Colorado to remain high on the list of states that provide quality care and services to people with disabilities in their homes and communities.

If you or a loved one need LTSS, The Independence Center is here to help point you in the right direction. Contact our Home Health Office Administrator at 719-471-8181, ext. 130 for help getting started.

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