Alzheimer’s and Brain Awareness Month

How Home and Community-based Services and Medicaid Waiver Programs Can Help Loved Ones with Dementia

Alzheimer’s Disease and Dementia

June is Alzheimer’s and Brain Awareness Month, and the Alzheimer’s Association estimates that there are currently more than 55 million people around the world who are living with Alzheimer’s or another form of dementia. According to the Alzheimer’s Association, Alzheimer’s is a brain disease caused by damage to the neurons or nerve cells in the brain, and these neurons are fundamental to all aspects of our behavior.

“In Alzheimer’s disease, the neurons damaged first are those in parts of the brain responsible for memory, language and thinking, which is why the first symptoms tend to be memory, language and thinking problems. Although these symptoms are new to the individual affected, the brain changes that cause them are thought to begin 20 years or more before symptoms start. When symptoms become severe enough to interfere with a person’s ability to perform everyday tasks, a person is said to have Alzheimer’s dementia.”

As the disease progresses, individuals with this and other forms of dementia will start to need help with daily activities. They may demonstrate changes in mood, personality, affect, or behavior. In later stages of the disease, the damage to the neurons of the brain eventually cause loss of mobility and other bodily functions, such as swallowing or speaking.

Intensive Care Needed

Alongside increasingly pronounced cognitive declines, these developments mean that the individual may eventually need daily 24-hour care. As the disease progresses, activities of daily living – basic self-care functions such as eating, toileting, and showering – become increasingly difficult or impossible, which becomes a caregiver responsibility that persistently grows heavier overtime.

While the patients can be overwhelmed by immersion in their symptoms, their closest caregivers, friends and family, also face numerous challenges in trying to navigate the confusing matrix of health care providers, each addressing discrete dimensions of their loved one’s ongoing treatment. In its publication, Special Report Mapping a Better Future for Dementia Care Navigation, the Association states (not surprisingly) that caregivers find it difficult and stressful to deal with the health care system. See the infographic for more detail about the challenges caregivers face.

Home and Community-based Services and Waiver Programs

Potential Benefits

Balancing the needs of the Alzheimer’s patient against those of their caregivers, all while improving outcomes and durations at home, is no simple task. Because of the chronic and progressive nature of Alzheimer’s, ongoing care is likely to be expensive and lengthy.

Many Alzheimer’s patients go to nursing homes, and Medicare will only provide home health care services for specific medical illnesses for those who are homebound or need skilled nursing care. Put another way, Alzheimer’s patients may need more care than Medicare provides.

However, Medicaid and CHIP Payment and Access Commission (MACPAC) – the non-partisan legislative agency that provides policy and data analyses and makes recommendations to federal agencies – says that home and community-based services (HCBS) are designed to allow people receiving long-term services and supports to live longer in their homes and communities. This same publication explains how individuals can qualify for and receive access to HCBS services via waiver programs.

One study, Evaluating Hardships Faced by Elderly Americans Requiring Long-Term Care and Support, published in American Journal of Managed Care, a peer-reviewed journal, reported that elderly individuals with functional and cognitive impairments have frequently incurred significant out-of-pocket expenses to pay for the long-term services and support (LTSS) they need, but are not covered by Medicare. In fact, some have used credit cards, and the greater the LTSS, the higher the expenses – a significant financial burden for the person and their family.

“In the past 50 years, the needs of Medicare beneficiaries have evolved beyond what the program covers to encompass both health and LTSS needs,” wrote the researchers. “Without significant updates to the program, many beneficiaries will continue to face significant financial burden, delay necessary care, and experience avoidable adverse outcomes.”

Indeed, these programs have continued to evolve.

Another study, State Generosity in Home- and Community-Based Services (HCBS): Variations and Impact On Dementia Outcomes, published in the peer-reviewed journal Innovation in Aging, says that HCBS can provide care for persons with conditions such as Alzheimer’s, which meets their needs while reducing overall medical spending.

Today, Medicaid long-term services and supports (LTSS) coverage and the Title III program under the Older Americans Act (OAA) of 1965 support most of the HCBS for older adults living in the U.S. with low-income and/or disabilities.

Weighed Against Real Challenges…

All states have waiver programs, which support the delivery of more services than are available through Medicare alone. As MACPAC says, “Section 1915(c) waivers and §1115 demonstrations are some of the most common mechanisms through which states cover HCBS.”

However, while all states may have waiver programs, not all HCBS waivers include patients with Alzheimer’s or other dementias. In addition, not all HCBS services are offered via waivers, and not all waivers have caps…just a few of the complexities.

For example, Alzheimer’s disease and other dementias do not have a linear disease progression. This means that people can demonstrate functional improvement and then decline, which makes the disease progression more of an oscillating spiral than a single line.

This makes it difficult to align HCBS waiver eligibility requirements with their functional assessment when it is not stable. These types of cognitive conditions occur at a higher incidence rate in populations with those with intellectual or developmental disability (IDD) or mental health conditions, making it difficult for waivers that serve those populations, but operate under different eligibility criteria to accommodate this type of condition.

Treatment protocols for IDD and mental health conditions also frequently call for a reduction in medication to the lowest sustainable level, whereas progressive conditions such as Alzheimer’s require increasing dosages. Providers may also restrict access based on court involvement or record, and dementia-related conditions can frequently manifest in accidental criminal activity, such as public nudity, shop lifting, car accidents, trespassing, and even assault.

States have several challenges when implementing programs that require a host of solutions such as:

  1. Decriminalizing actions/behaviors that originate from the underlying condition, which includes appropriately training law enforcement and emergency medical technicians.
  2. Ensuring the admissions criteria do not inappropriately exclude individuals.
  3. Updating medication protocols to ensure that people are not arbitrarily adhering to a dose reduction, but instead use a titration protocol – the process of adjusting the dose of a medication for the maximum benefit without adverse effects – when dementia is present.
  4. Ensuring that eligibility criteria and assessments are able to distinguish between temporary increase in functioning and a condition that is likely to result in a long-term decline.
  5. Providing the appropriate community supports, which allow individuals and their caregivers to receive services that best meet their needs.

Clearly, these challenges are detailed and complex, and states need a business partner with experience and expertise, one that is fluent in the language of these programs and well-versed in every requirement.

How Myers and Stauffer Can Help

Helping state agencies qualify for waivers, implement new HCBS programs, and fine tune existing ones is critical.

And we’ve been doing these things for decades.

Established in 1977, Myers and Stauffer is a nationally based consulting and certified public accounting firm. For more than 46 years, we have worked exclusively with local, state, and federal government health and human-services agencies to help them accomplish their most critical goals for the nation’s most vulnerable people.

We have worked with state-agency clients to provide various forms of rate setting, consulting, technical assistance, and support for HCBS programs. We are familiar with the unique challenges that these providers and services can present.

In particular, we can help states to better align their eligibility and service descriptions to provide improved support for people and their families, while also reducing the out-of-pocket burden on families by making sure that people are appropriately directed to the proper HCBS programs.

Over the years, we’ve done our homework and conducted detailed research on dimensions of HCBS programs that helps guide our processes, inform our approach, and improve outcomes for our clients and those they serve.

These same talented professionals have also authored an HCBS blog post series on topics such as waiver renewals, rate setting, cost information, provider surveys, stakeholder engagement, design and administration of cost surveys, sufficient time for survey completion, and technical assistance and guidance on regulatory and legislative compliance issues.

We are ready to put this skill and experience to work for you. For more information, contact one of our team leaders below.

Jerry Dubberly, PharmD
PH 404.524.9519
Bobby Courtney, JD, MPH
PH 317.815.5475
Catherine Sreckovich, MBA
PH 404.524.0775 x372
PH 866.758.3586

Client Experience:

Myers and Stauffer has worked with several state agency clients providing various forms of rate setting, consulting, technical assistance, and support for HCBS programs. We are familiar with the unique challenges that these providers and services can present. We are regularly called upon to develop fiscal and program policy, and perform rate models for the full continuum of state-funded services. These are examples of our relevant work with state clients and HCBS programs:

  • Medicaid Enterprise Program Integrity Audits. Myers and Stauffer performs program integrity desk reviews of financial and statistical reports for HCBS providers. We also perform post-payment reviews of paid claims billed by providers of services under various waivers, including HCBS waivers.
  • HCBS Cost Report Development. Myers and Stauffer participated in several in-person workgroup meetings with the state agency and industry representatives to discuss concerns and ideas surrounding cost reporting instrument development and implementation.
  • Personal Care Services/Personal Attendant Care Services Reimbursement Methodology and Reimbursement Rates. Myers and Stauffer participated in state planning discussions and was responsible for: reviewing the Medicaid state plan and approved waivers to compile a listing of service descriptions and billing codes; using provider-submitted HCBS cost reports as source documents for reimbursement rate development; developing a modeled rate methodology that fits the personal care services/personal care attendant service type with consideration for numerous complex aspects. 
  • Review Rate Structures of HCBS Programs. Myers and Stauffer conducts bi-annual rate studies for services provided to individuals with intellectual and/or developmental disabilities and to make recommendations for potential changes to the rate methodology.
  • Medicaid Provider Audits. Myers and Stauffer performs desk reviews, on-site field examinations, and program integrity reviews of submitted claims of state Medicaid providers, including HCBS.
  • HCBS Waiver Claim Audits. Myers and Stauffer evaluates a randomly-selected sample of Medicaid paid services provided to individuals receiving benefits under one of 11 HCBS waivers.
  • Fraud and Abuse Detection Services. Myers and Stauffer performs post-payment reviews of paid claims billed by providers of services under various waivers, including HCBS waivers.
  • Long-Term Care Studies. Myers and Stauffer worked with the state Medicaid agency to complete an evaluation of a state long-term care service delivery system.