OM: All States Offer Self-Directed Care to Over 800, 000 Americans

NYAPRS Note: Medicaid beneficiaries can access public healthcare dollars usually one way: by going to services and agencies that are reimbursed by Medicaid. But the most transformative approach is self-directed care, which makes Medicaid dollars directly available to beneficiaries, typically as part of an approved plan and dispensed through a fiscal intermediary.

As Open Minds research points out, all states are now offering some form of self-directed care, with a 2013 study finding approximately 838,503 consumers participating in selfdirection. This is approximately, 1.2% of the more than 68 million consumers enrolled in Medicaid and 8.2% of the more than 10 million consumers who qualify on the basis of disability.

New York is poised to roll out self-directed care as a Home and Community Based Services for people with serious behavioral health needs in the coming months: stay tuned!

Here’re more details on self-directed care by SDC pioneer Patrick Hendry and on its development in NY by Briana Gilmore. For more reading, we highly recommend What Is Self-Directed Care & How Does It Affect The Delivery Of HCBS?: An OPEN MINDS Market Intelligence Report.

More Community-Based Care + Consumer Empowerment = Self-Directed Care

By Athena Mandros Open Minds June 28, 2016

Developed by OPEN MINDS, 163 York Street, Gettysburg PA 17325, All rights reserved.

You may not alter, transform, or build upon this work. You may not use this work for commercial purposes without written permission from OPEN MINDS.

Self-directed care affords consumers receiving Medicaid home- and community-based services (HCBS), or their representatives, the right to manage their services based on their needs and preferences. Medicaid self-directed care offers consumers employer and/or budget authority over their care. Employer authority allows consumers to hire, manage, and fire the individuals who provide their HCBS services; and budget authority allows consumers to decide how their HCBS funding or budget amount is spent for a given year.

What are the benefits of this system? To answer that, it’s first important to note that the goal of the self-directed care movement is to allow consumers to have as much control over their care as possible and to allow consumers to live independently in integrated community settings. When it comes down to it, self-directed care is more about consumer rights than anything else.

From a budget standpoint, self-directed care should be cost-neutral – spending by consumers should be the same as under the traditional agency model. However, studies investigating whether this is true are conflicting.

Some states have seen a decrease in spending by imposing a discount on the dollar amount of services when they are self-directed, while other states have seen an increase in spending because consumers are more likely to get the services they are entitled to receive (see The Case for Medicaid Self-Direction: A White Paper on Research, Practice, and Policy Opportunities).

What does the self-directed care landscape look like? We recently did a scan of self-directed care programs in every state in 2016, and found that all states offer at least one program that allows consumers to self-direct care.

And there are a number of program options that states use to offer self-directed care. They can submit a personal care state plan amendment that allows for self-direction; they can add a provision to their 1915(c) or 1115 demonstration waiver; and they can implement a 1915(i) state plan option, a 1915(j) state plan option, or a 1915(k) state plan option (For more on these options see What Are The Medicaid State Plan Options For Developing Home- & Community-Based Service Programs? AnOPEN MINDSMarket Intelligence Report and Why Do States Need Home- & Community-Based Services Waivers?).

Each of these options varies in its specific rules, including populations that can self-direct care and the services that can be self-directed. Each state can use more than one option to provide self-directed care to consumers – here are the options they are using:

  • 46 states have at least one 1915(c) waiver that allows self-direction – it’s by far the most popular way to allow consumers to self-direct care. In total, there are 168 waivers that allow self-direction, the majority of which serve the intellectual/developmental disability and autism populations.
  • Nine states use 1115 demonstration waivers to offer self-directed care. These waivers are most often used by states that have managed long-term services and supports (MLTSS).
  • Four states have a 1915(i) state plan option, at least six states have a 1915(j) state plan option, and five states have a 1915(k) state plan option that allows consumers to self-direct care.
  • Two states (Alaska and Nevada), only have a state plan amendment that allows consumers to self-direct personal care services.

A variety of factors are converging that will continue to make self-directed care a big part of the Medicaid system – first, the continued preference for community-based treatment settings (see Medicaid HCBS Is Driving A New I/DD Service Delivery Paradigm). Second, an evolution in our thinking about the role of the consumer means that payers and provider organizations are looking for new ways to engage and enable consumers as part of the care team (see Is Consumer Engagement A Habit At Your Organization? and Less Consumer Education Demands More Consumer Engagement).

In our current market, consumers are empowered to participate in their own recovery and expect to be active participants in making decisions about their care. This means provider organizations need to tailor their service offerings to individual consumer needs, provide more service options,work to more actively engage consumers in their care decisions, and develop partnerships with other community-based organizations to deliver the services and social supports that consumers need and want. In the future, expect that we’ll continue to see self-directed care play a large role in how home- and community-based services are delivered.

For more on state authorities to self-direct care be sure to check out: What Is Self-Directed Care & How Does It Affect The Delivery Of HCBS?: An OPEN MINDS Market Intelligence Report. The report includes information on:

  • Outline of the principles states must follow to implement a participant directed care program and definitions of the different components of self-directed care
  • Explanations of the authorities states can use to implement a self-directed care program
  • A state-by-state list of the 1915(c) waivers that offer self-directed care programs, plus information on the populations served
  • A state-by-state list of the 1915(i) state plan options that offer self-directed care programs
  • A state-by-state list of the 1915(j) state plan options that offer self-directed care programs
  • A state-by-state list of the 1915(k) state plan options that offer self-directed care programs

And stay tuned for when we discuss the complexities of providing self-directed care through managed LTSS programs.