Feature Issue on Self Direction
What Would a Great Self-Direction Program Look Like?
Self-direction programs aim to give a person control over the money that pays for their services. Over the past several years, we have learned that this is harder to do than it seems. This article points out 13 ideas about what makes a self-direction program successful. It shares examples of how the IRIS Self-Direction Program in Wisconsin is living up to these ideas in some areas and points out other areas where the program could do better. Wisconsin’s program is 17 years old, and the author of this article helped to design it. He writes that self-direction programs need to have a strong base. For example, they should be written into state law, and staff at the state level should understand self-direction well. Flexibility and resources to manage budgets should be built into the program. There should not be rules that leave people out based on the type of disability they have. Plain-language program materials, along with training and support, is essential. The people who run the programs need to understand diversity and be able to help people in a way that honors their cultural backgrounds. Budget plans need to be based on a person-centered process and should match the person’s needs, and it should be clear how the program determined what the budget amount would be. Participants ought to truly have a choice over who will provide their supports, whether it be a family member, friend, or someone else.
Self-Direction is based on a simple idea: I want to control my services, so I can have more control of my life. On its face, it would appear that designing a self-direction program should be a straightforward enterprise: set a person’s individual budget, give the person control of their budget and their choice of providers/workers, and create a mechanism for providers and workers to get paid.
But in states where self-direction has been operational for a while, it has become clear that there is more to designing a self-direction program than first meets the eye. This article is a summary of the essential elements of what I envision to be a great self-direction program, based on major themes from self-direction literature worldwide, as well as the insights of people who self-direct their services, their family members, and self-direction advocates.
Following each element is a brief notation summarizing the current state of the IRIS (I Respect, I Self-Direct) Self-Direction Program in Wisconsin, based on the consensus of IRIS participants and other stakeholders at a recent IRIS Summit. At 17 years old, IRIS is an example of a mature self-direction program in a state with the third-highest per capita enrollment in self-direction in the United States.
1. Clear Self-Direction Definition and Values
Self-direction is clearly defined in statute, policy and/or regulations, and the core values are clearly stated and consistent with progressive views of self-direction, that self-direction is intended to enhance community integration, a sense of belonging in the community, valued social roles, and opportunities to participate in paid work.
Unfortunately, Wisconsin never developed a clear definition of self-direction for IRIS in state law or state policy. As a result, IRIS values have eroded over time. As an example, when the program started, state government was very clear that any adult who meets the eligibility criteria for Medicaid long-term care could choose to self-direct. In recent years, some people with significant support needs have been discouraged from enrolling in IRIS and encouraged to enroll in Wisconsin’s managed care program instead.
2. A Strong Base for Self-Direction in Government
The agency or unit of government that oversees the self-direction program employs individuals with a solid understanding of self-direction and a commitment to it, including a recognition of how it is inherently different from other human service delivery models. This agency has strong ties and active dialogue with people with lived experience of disability as well as organizations representing self-direction participants and their families and is committed to continuous evaluation of how the self-direction program is working. The agency accepts responsibility to work with stakeholders to improve the self-direction program in relation to the elements in this article, and to resist governmental actions that would erode self-direction. The agency also plays an active role in educating the public regarding self-direction and ensuring that people entering the long-term care system are given clear information on the self-direction option. Lastly, the agency actively promotes building the capacity of systems outside the paid services in the self-direction program that are important to self-direction participants, such as public or specialized transportation and affordable, accessible housing.
When IRIS started in 2008, there were knowledgeable state staff who were assigned solely to IRIS and committed to making the program work. Subsequent organizational and system changes, including staff turnover and leadership changes, present challenges to program integrity.
3. Inclusive Eligibility Criteria
Whether a self-direction program is created to serve people with disabilities, people with mental illness, older adults, or all of the above, eligibility to self-direct one’s services within each population is broadly defined in order to affirm the principle that everyone can self-direct with appropriate support, and to ensure that no one is arbitrarily excluded from self-direction based on the level of a person’s disability or dementia, their past track record of living independently, their guardianship status or other similar factors.
Officially, this is a strength in IRIS: any adult with IDD or a physical disability, or any older adult, who is eligible for Medicaid long-term care is automatically eligible for self-direction, if that person chooses that option. IRIS is also available statewide. The only downside is the unofficial discouragement for some people to enroll in IRIS cited in the first bullet point above.
4. Equity, Diversity and Cultural/Linguistic Competence
At all levels of a self-direction program, vigorous efforts are made to ensure that policies, procedures and practices do not intentionally or unintentionally exclude or under-serve potential self-direction participants because of their race, ethnicity, sexual orientation, economic status, primary language, reading/writing/verbal communication skills, or lack of active family to assist with self-direction. Information about self-direction is culturally and linguistically accessible. Support brokers, provider staff, and independent workers are culturally competent and practice cultural humility. The flexibility and creativity inherent in self-direction is leveraged so services and supports are responsive to participants’ cultural backgrounds and preferences. There should also be safeguards to prevent the exploitation of undocumented or other workers providing services/supports to participants.
There is no specific strategy within state government or across all the agencies involved in IRIS to ensure that under-represented groups have access to IRIS, or to overcome any language barriers which could interfere with participants’ capacity to successfully self-direct.
5. Transparent, Reliable and Adaptable Individual Budget-setting
The process for setting individual budgets: a) is transparent and understandable to participants and families, b) reliably generates an individual budget amount that is sufficient to cover the cost of the services/supports the person needs/chooses and the cost of fair wages and benefits, and c) includes a rapid review and approval process to modify the budget when a crisis necessitates a need for it.
A major complaint among IRIS participants is the “black box” of individual budget-setting: the algorithm used to set individual budgets is not transparent or understandable. Initial IRIS budgets are often inadequate to cover the true cost of the services participants need and/or to pay competitive wages to workers, so many participants have to request budget amendments. Fortunately, most budget amendment requests are eventually granted, but the approval process is generally quite slow.
6. Support for a Participatory Individual Planning Process
The process for creating individual self-direction plans offers ample time and support for participants and families to focus on what the participant wants, enable the participant to make informed choices, and ensure that the participant is in the driver’s seat for decision-making and plan development. In various locations, this support is provided by people with job titles such as facilitators, support brokers, independent brokers, self-direction consultants, peer counselors, coordinators and community navigators. The process also includes culturally inclusive language and processes, and appropriate accommodations.
Many IRIS participants feel included and respected in the individual planning process, but some report that the process is not inclusive or meaningful for them.
7. Full Budget Authority
Participants and families have full control over the person’s individual budget, as long as the funds are used for allowable goods or services as defined in statute, regulation and/or in a state’s Medicaid waiver agreement with the federal government. Full budget authority means that a) government does not require prior authorization for an allowable good or service, and b) participants and families have complete freedom to negotiate rates of payment with various vendors and negotiate wages/benefits with independent workers.
Budget Authority in IRIS has eroded over time. Many service choices now require prior authorization by a state official, and participants often encounter limits on the wages they can pay their workers, which can make worker recruitment difficult or impossible.
8. Full Employer and Technology Authority
Participants and families have complete flexibility to choose the vendors for goods and the providers of their services, subject to criminal background checks for direct care workers. Background checks should be no more restrictive than those used in other human service programs.
This flexibility includes the opportunity to choose from independent workers, neighbors, or family members, in addition to established disability, mental health or aging provider agencies and transportation, housekeeping, shopping or other services utilized by the general public. Ideally, the program includes safeguards to ensure that family members are not exerting undue influence over participants to obtain employment for themselves. It also includes the opportunity to supplement or replace services with appropriate technology of the person’s choice, for such services as scheduling, medication reminders, remote monitoring support in lieu of overnight staff, and employment task prompts.
IRIS participants generally have a lot of freedom to choose providers or independent workers. Unfortunately, the workforce crisis has often made it hard to find workers. This has been exacerbated by an overly restrictive background check policy that results in excessive disqualifications of potential workers, especially workers of color. As new cost-effective technologies become available, such as remote supports where appropriate, the program has been slow to adapt.
9. Flexible Provider Agency Capacity
In every locale covered by the self-direction program, there is sufficient availability and choice of disability, mental health and/or aging provider agencies (depending on the population served) that are familiar with and supportive of the concept of self-direction, and sufficiently flexible in the provision of their services to accommodate the choices and cultural differences of participants.
Most of the providers serving IRIS participants are also providing services in managed care. Some of them are resistant to “unbundling” the standard packages of multiple services they offer in managed care, such as residential service packages, to allow IRIS participants to pick and choose which of these services they want to include in their IRIS plans.
10. Support for Successful Participation in Self-Direction
Participants and families have access to support as needed to: change individual plans; request changes in individual budgets; negotiate rates with vendors; effectively recruit, train and supervise independent workers; find new providers; develop backup plans; deal with medical, behavioral or other crises; and develop appropriate health and safety protections.
In IRIS, there are IRIS Consultant Agencies (ICAs) that employ IRIS Consultants (ICs) to provide support to IRIS participants. Participants can choose among multiple ICAs. Unfortunately, IC caseloads have grown in recent years to an average of 45-50 participants per IC. That has made it impossible for ICs to provide all the support that participants need, so some participants (especially those with no active family to provide support for self-direction) lack necessary support and consequently struggle to navigate the program.
11. Participant-Friendly Processes throughout the Self-Direction Program
All of the processes (including those for grievances and appeals), mechanisms, and forms associated with the administration of and participation in the program have been designed to be as simple, understandable and timely as possible, and are available in accessible formats. Red tape has been kept to a minimum. In comparison with managed care or fee-for-service programs, participants and families are not experiencing extra “transaction costs” (time, energy, and stress associated with the mechanics of self-direction) because they chose to self-direct their services.
Although IRIS is more participant-friendly than most other human service programs in Wisconsin, the consensus among IRIS participants and their families/supporters, according to a recently published appraisal by several advocacy groups (https://bit.ly/42Tmvhc), is that IRIS has become less participant-friendly over time and there is far too much red tape and excessive transaction costs.
12. Reliable Fiscal Intermediaries
The fiscal intermediary agencies that make payments to provider agencies and independent workers, handle payroll taxes and workers compensation, and generate spending reports for participants and families carry out these functions in a participant/family-friendly manner, with a high degree of accuracy, transparency, timeliness and accessibility.
In IRIS, fiscal intermediaries are called fiscal employment agencies (FEAs). The good news is that participants have a choice of FEAs. Unfortunately, many participants have experienced inaccurate spending reports, errors in workers’ paychecks, and delays in onboarding new workers, the recent IRIS report found. These problems have negatively impacted IRIS for years and the state has not taken sufficient action to correct them.
13. Training for Successful Self-Direction
Participants and families have easy access to free, high-quality training in a variety of formats to enable them to be successful in all aspects of self-direction. This training should include trainers with lived experience of disability and self-direction.
Unlike some other states, including the New Jersey Office of Education of Self-Directed Supports, Wisconsin does not have an effective statewide program to provide in-depth initial orientation or ongoing training to IRIS participants or their families, according to the IRIS report.
Self-direction is a powerful concept and many people with disabilities have a strong motivation to exert control over their lives and services. Consequently, it is incumbent on states and the various players involved in operating a self-directed system to design and run that system in a manner that is truly consistent with self-direction values and is customer-friendly in all of its policies and processes.
Many lessons on how to do self-direction right (and sometimes how to do it wrong) have been learned in states that have offered self-direction programs for an extended period. Now it’s time to put those lessons to work and make self-direction better. People with disabilities deserve it.