Americans are rejecting institutional care. A recent poll found that most Americans give nursing homes an average D+ grade for quality of care and another recent survey found that 93% of adults want to age in place. The data is clear – people are eager to get the long-term care they need in the safety of their homes.
Unfortunately, with the caregiver shortage and rising cost of care, many find this difficult to achieve. Self-direction offers a compelling solution to this pressing problem. Here we explorewhat self-direction is, its benefits, and why we expect this innovative model to continue growing for many years to come.
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Self-direction (also referred to as consumer direction or participant direction) is a long-term care service delivery model that broadens individual choice and control. It represents a fundamental change in the way people access Medicaid services and supports, shifting decision-making power from providers or government agencies to the program participant.
Depending on the program, self-directing participants can have employer and/or budget authority over their care. Employer authority allows participants to hire, manage, and fire the individuals who provide their services, while budget authority gives them control over how their budget is spent on services and supports.
Self-direction offers significant benefits to participants if they’re willing and able to take on more responsibility.
Independence – Self-direction enables participants to keep living in their own homes and accessing local support systems as opposed to institutional care. It might also be an option for individuals within residential facilities to move back home.
Choice – Rather than having a homecare worker assigned by an agency, participants can select a paid caregiver themselves, which can even include a family member or friend.
Control – Participants decide how to allocate their budget. While budget expenditures must be for Medicaid approved goods or services and must typically increase independence, budgets can be used for items and services beyond just paying caregivers. Some participants increase their independence by installing a ramp in their home, or by purchasing a microwave to be able to independently prepare meals, instead of relying on caregivers.
Access – The ability to hire friends or family members is especially important in rural areas where homecare workers and agencies are limited. In fact, between 2013 and 2019, the number of available home care workers for every 100 patients in need fell by nearly 12%.
Cost-Effectiveness – Self-directing participants can strategically use their budget to gain the most benefit. For example, they may choose to use their budget to purchase an item for a one-time cost that allows them to use fewer hours of homecare labor ongoing.
While there are many advantages to self-direction, a person choosing self-direction must believe it’s the right fit for them. Remaining at home might not be a long-term care option for some people. In addition, some participants might not want the level of responsibility required – particularly related to being an employer. While many safeguards and supports exist to make self-direction accessible to many, it is not the right fit for everyone.
States have several options to offer self-directed Medicaid services:
There are different guidelines for each Medicaid funding option, including which populations can self-direct care and which services can be self-directed. However, the Centers for Medicare & Medicaid Services (CMS) has several overarching requirements:
Self-direction emerged out of the Civil Rights Movements of the 1960s and gained additional traction through the 90s and early 2000s, increasing in major adoption through the last decade. With a history of growth over the last 20 years, the COVID-19 pandemic accelerated this trend dramatically. Data from HHAeXchange showed a 20% increase in self-directed services for the first nine months of 2020, compared to 7.5% in prior years.
Since the pandemic began, CMS has been encouraging states to expand or adopt self-direction in its Appendix K: Emergency Preparedness and Response Instructions for 1915(c) waivers. Regardless of whether it is a pandemic, natural disaster, or national emergency like war or foreign attacks, self-directed services are especially useful during times of crisis for three primary reasons:
Individuals can hire from a broader pool of potential workers. This flexibility is critical due to direct care worker shortages and closures of community and day programs in the case of an emergency.
A self-direction budget gives the individual flexibility in meeting unanticipated expenses, such as meal delivery and medical equipment.
We expect to see self-direction playing a larger role in the delivery of Home and Community-Based Services (HCBS) for numerous reasons.
The scene is set for self-direction to grow. How can HCBS providers prepare?
To be successful, HCBS providers must collaborate closely with participants. It’s also critical to stay compliant with both CMS and individual state policies. Providers need integrated technology that will:
Interested in building or expanding a self-directed program? HHAeXchange provides robust software for HCBS providers, helping people who are aging or have disabilities thrive in their homes and communities. As the national leader in self-direction software, HHAeXchange serves thousands of self-directing individuals in more than 40 states. Learn more about how we help all types of organizations build and expand their self-direction programs.
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