NYAPRS Note: New York and other states are weighing plans to implement the 1915.i Home and Community Based Services state option that allows for Medicaid flexibility to fund recovery focused services, including a self directed services/budgeting component.
Self directed care is one of the most transformative and effective ways to improve care outcomes and is currently being implemented in at least 2 managed care pilots, one on Pennsylvania via Magellan Health Services and one in Texas via ValueOptions. For more details, see 2011 NYAPRS Executive Seminar presentations Self-Directed Financing of Services for People in Mental Health Recovery and MHASP Consumer Recovery Investment Fund: Self Directed Care Delaware County, PA.
Here are some excerpts and the link from a very timely paper on what is described here as ‘personalized health budgets’ that was released last year in England and co-written by Vidhya Alakeson, who spent some time in the US in 2010 as Policy Analyst, Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services and who helped inform the Pennsylvania pilot.
As of last year, there were 26 pilot sites in the UK that were experimenting with personal health budgets (www.personalhealthbudgets.dh.gov.uk) with “a small number of pilots are also underway in the United States and in Western Australia.”
Recovery, Personalisation and Personal Budgets
Implementing Recovery through Organisational Change
Excerpts by NYAPRS
By Vidhya Alakeson and Rachel Perkins May 2012
Centre for Mental Health NHS Confederation Mental Health Network
There are two subjects that have the potential to shape mental health policy and practice in the UK and internationally: recovery and personalisation. Both have emerged independently and are prominent in the Government’s mental health strategy, No Health Without Mental Health (Department of Health, 2011). In similar ways, both challenge the current predominance of professional, clinical knowledge over the expertise of lived experience in the mental health system and require significant changes in the culture, practice and organisation of mental health services. At their core, both recovery and personalisation are rooted in self-determination and reclaiming the rights of full citizenship for people with a lived experience of mental health problems.
Having left institutions, many disabled people found themselves living in the community but segregated from others and denied the opportunity to play a full part in family and community life. This led to a call for independence that was expressed most clearly in the desire of individuals to take control of their support in order to create a more meaningful, more integrated and more fulfilled life for themselves as active participants in the community (Brewis & Fitzgerald, 2010).
The concept of personalisation was developed in part as a response to the demands raised by the ‘independent living’ movement defined as “all disabled people having the same choice, control and freedom as any other citizen - at home, at work, and as members of the community” (Disability Rights Commission, 2002).
Personalisation emphasizes greater individual control of the resources and supports needed to enable people to participate as equal citizens and pursue their own ambitions and aspirations rather than those determined for them by services and professionals (PMSU, 2005; ODI, 2008). Personal budgets in social care and personal health budgets in the NHS are, therefore, tools to support the personalisation of health and social care services.
A personal budget is an allocation of social care or NHS resources or an integrated allocation of both that is controlled by an individual and can be used to meet identified goals. PBs and PHBs give individuals and their carers greater say over how their health and social care needs are met. They do this by transferring control of public resources to individuals rather than having the state commission services on their behalf. Individuals can receive the money directly, it can be managed by an independent third party, or can be held as a virtual budget by commissioners. Whichever way individuals choose to receive the money, they should still be able make the decisions that matter most to them.
PBs and PHBs are also more than a budget; they are the basis of a different conversation between individuals, those who support them and clinical professionals in which each shares information and expertise to produce better outcomes.
The seven step personal budget process
1. The first step is for individuals to complete an assessment or self-assessment questionnaire that identifies areas where they need support.
2. The assessment generates a score which is linked to a resource allocation system (RAS) to produce a personal budget amount. The RAS ensures that resources are allocated in a fair and transparent way to individuals according to need.
3. The personal budget amount provides the starting point for developing a recovery support plan which identifies the goals a person has for his or her recovery and how those goals could be met. People can plan by themselves, with the support of friends and family, with peer support or with a professional broker. There is no set menu for support, allowing people and their supporters to develop highly personal, creative solutions.
4. The support plan is approved on the basis of being financially and clinically appropriate. Since there is no fixed menu, approval should focus on the likelihood that the support plan will contribute to a person’s recovery.
5. Individuals can exercise as much or as little direct control over the money in their personal budget as they choose. They can receive it as a direct payment which they manage, they can use a third party to manage the money on their behalf or it can be held by a provider or commissioner.
6. With decisions about the money made, the services and supports in the plan can be put in place, either by the person themselves or by the organisation that holds the budget in collaboration with them.
7. A person’s support plan is reviewed on a regular basis and its effectiveness is judged on the basis of whether the goals identified in the plan are being met and the person is progressing in their recovery. If a person’s needs change significantly, they will complete a new self-assessment and will be allocated a new personal budget amount.
Recovery and personalisation: a shared purpose
Recovery and personalisation see people who use services as “whole people in their whole context” (Brewis & Fitzgerald, 2010). This means recognizing that alongside the diagnoses, deficits and dysfunctions individuals may have, they also have strengths, skills and assets to contribute. They have likes and dislikes, preferences, tastes and values. Everyone is more than a ‘mental patient’ and occupies multiple roles as, for example, parent, sibling, child, employee and carer. An individual’s social context also brings with it strengths and possibilities for enhanced recovery. The support of family members, social networks or having a valued role in the community can all provide the hope that drives individual recovery.
Recognising individuals as whole people and harnessing their strengths, preferences and motivations will strengthen the possibility of recovery. In the context of personalisation, the ‘real wealth’ framework (see box on the right) has been developed to define the factors that underpin the quality of people’s lives (Duffy, 2010). The challenge for the mental health system is to enhance not deplete the ‘real wealth’ that provides the basis for individual recovery and a fairer society.
For example, the common failure to take psychiatric medication often stems from the negative effects of prescribed medicines on facets of life that individuals consider important, such as their role as a parent or employee - their real wealth. These activities have also been described as ‘personal medicine’ - the everyday activities that can be a source of motivation and have significant therapeutic value (Deegan, 2005). A conflict between professionally recommended treatment and ‘personal medicine’ arises when medical professionals fail to consider the individuals when making treatment decisions (Deegan & Drake, 2006).
What recovery and personalisation mean for current systems and services
Today’s mental health services are organized around the three Cs: cure, care and containment. The primary focus of services is one of cure: the reduction/elimination of symptoms or problems. Unless and until a person’s problems can be eliminated they are ‘cared for’ and, should they be a threat to their own health and safety or that of others, they are ‘contained’ (Perkins, 2012; Perkins & Slade, 2012). This focus does not recognize the basic goals that most individuals have for their lives: to have meaningful activity; to have meaningful relationships; and to have a place to call home (Nerney, 2011). Recovery and personalisation challenge the mental health system to support individuals to achieve these goals. They call into question the current ‘gift model’ in mental health services in which professionals are in control and individuals are recipients of the care and treatment decided by these ‘experts’ (Duffy, 2010).
The scale of the challenge to the current system was well documented in a series of papers by the NHS Confederation that reported the views of Chief Executives, mental health clinicians and service users about personal health budgets. Demand for PHBs among service users was strong as all wanted to change something about their current care package but few were optimistic about gaining greater control (NMHDU and Mental Health Network, 2009, 2011a, 2011b). Each group saw significant barriers to the implementation of PHBs in the NHS, many of which were linked to current culture and practice. As one psychiatrist remarked:
“I’m a highly trained, highly expert specialist in a field which has involved many years of training, many years of clinical experience, and my job is to know the best evidence and best practice. It would be completely against my code of practice to say to a young person, yes go ahead and spend money on something that has no evidence base.” (NMHDU & Mental Health Network, 2011a).
The three most important challenges posed by recovery and personalization for the mental health system are:
- shifting the established balance of power between individuals and professionals,
- ending the dominance of clinical treatment, and
- reorienting the system towards wider social outcomes.
Shifting the balance of power
Central to the challenge that recovery and personalisation pose to the existing service system is the issue of who holds the power and control (see Repper & Perkins, 2003, 2012; Shepherd et al., 2008). Personalised recovery-focused practice requires recognising two sorts of expertise: professional expertise grounded in research, training and clinical experience and the expertise of having lived with a mental health condition. The challenge for services is to move from attempts to ensure compliance with ‘expert’, professional prescriptions to a process of shared decision-making that brings together these two types of expertise, shifting from a ‘gift model’ to a ‘citizenship model’ with the individual at the centre of the service system (Duffy, 2010).
“Shared decision making diverges radically from compliance because it assumes two experts - the client and the practitioner - must share respective information and determine collaboratively optimum treatment... It helps to bridge the empirical evidence base, which is established on population averages, with the unique concerns, values and life context of the individual client. From the vantage point of the individual healthcare client, the efficacy of a particular medication is not certain... the question of how the medication will affect the individual becomes an open experiment for two co-experimenters - the client and the practitioner.” (Deegan & Drake, 2006)
A new relationship with clinical treatment
Linked to the concept of a power shift has to be a move away from the centrality of clinical treatment as the only valid route to well being. Some people find treatment-whether psychological of pharmacological - helpful, but treatment forms only a part (and probably a smaller part than most professionals would care to acknowledge) of what is often a rich tapestry of ways in which people manage the challenges they face.
”Over the years I have worked hard to become an expert in my own self-care...
Sometimes I use medications, therapy, self-help and mutual support groups, friends, my relationship with God, work, exercise, spending time in nature - all of these measures help me remain whole and healthy, even though I have a disability.” (Deegan, 1993)
Professionals will remain important, they have important tools to share: the latest guidelines, knowledge of research evidence and experience from clinical practice. But in a recovery-oriented system, professional expertise should be ‘on tap’, not ‘on top’ (Repper & Perkins, 2003, 2012; Shepherd et al., 2008). It should be readily on hand and available when it is needed but it is up to individuals how they use that knowledge and the extent to which it is balanced by other approaches and priorities. The value of professional treatment and intervention lies in supporting self-care and the pursuit of individual ambitions.
From service silos to health and social outcomes
Supporting people to rebuild their lives means breaking out of existing service silos dictated largely by government funding and bureaucratic systems to pursue improvement in outcomes. It means placing greater emphasis on services such as housing, friends and social networks, education and employment alongside clinical care and treatment. This will involve greater coordination across public services as well as greater flexibility in the way NHS and social care resources can be used. A college course may help someone recover and a computer connected to the internet may keep someone safe enough to remain out of hospital, but neither would traditionally be paid for by the NHS. It will also mean greater use of universal services and community resources that promote inclusion and social connection, in contrast to community-based services that have often trapped people in segregated settings (Boardman & Friedli, 2012).
Personal health budgets as tools for recovery
The extension of personalisation from social care into the NHS creates new opportunities to use personal health budgets to support recovery. There is, as yet, no blueprint for exactly how PHBs should work, where they are most effective and the appropriate scope for individual control. A lot of experimentation has been undertaken through the pilot programme that will inform these questions.
But the eight features discussed below will need to be put in place if PHBs are to be effective tools for recovery:
1. A simple, fair resource allocation system
2. Effective recovery planning (combined with effective support when required)
3. New approaches to opportunity and safety
4. A more diverse workforce
5. Monitoring on the basis of outcomes not spending
6. A new evidence base
7. A more diverse market
8. Sustainable funding
A simple, fair resource allocation system
For individuals to take control of their recovery and be able to plan effectively how best to use the resources at their disposal, it is important for them to know upfront how much they have to plan with. This does not mean that the budget is the only important dimension of a PHB. In fact, it is the change in the conversation that happens through a well-functioning recovery planning process that is critical. But a transparent allocation of resources is a good starting
point for planning and it protects equity while allowing a range of ways in which people are supported.
The PHB pilot features three broad approaches to resource allocation:
1. Small, one-off payments are being used to enhance individual recovery.
2. Resource allocations systems that match an assessment of need to an amount of money. This is the approach being taken in Croydon (see box on the right).
3. PHBs based on the cost of existing packages of care. This has been the approach taken with large, residential care packages.
In addition, attempts are being made to integrate NHS and social care resources to provide individuals with a single, integrated budget and planning process. It will be critical to ensure that allocation systems for PHBs remains simple and focused on recovery and do not become overly complicated and bureaucratic, as they have done in some Local Authorities (TLAP, 2011).
Effective recovery planning
For personal health budgets to be effective, planning must focus on a person’s whole life – what is good, what could be better, what matters most to them and what are their goals and aspirations. The planning that the mental health system does for and with individuals should, therefore, be seen as only one contribution to self-management. For people who are subject to the Care Programme Approach (CPA), that care plan can be integrated into a single plan to support recovery that the person manages as part of their own self-management plan, Personal Recovery Plan or ‘Wellness Recovery Action Plan’.
A recovery support plan does not have to be written for a particular length of time. It may be that a short-term plan for the next month is most appropriate, with a longer term plan to follow. It is possible to build contingencies into the plan. For example, some people find a short stay in a bed and breakfast or increased support from a personal assistant at home a particularly effective form of respite that can prevent hospitalisation. They can keep money aside from their budget to pay for this when it is needed.
Clinicians can be too bound by traditional ways of thinking to be effective at recovery planning. Independent support brokers can be effective but can significantly add to costs. Friends and family members, peers with lived experience and members of the community can all provide support for recovery planning. If everyone who develops a recovery plan supports one other person to plan, the costs can be kept to minimum. (Financial sustainability is discussed further below.)
Monitoring on the basis of outcomes not spending
Recovery support plans should be regularly reviewed to ensure that their goals are being met. Individuals are held accountable for meeting the goals and not for each individual purchase they make. This is more important than closely monitoring spending. The case study opposite provides an example of the health and social objectives that Ann, a PHB holder in Northamptonshire, has chosen and the mix of clinical and non-traditional services and supports that she is using to meet those objectives.
Individuals have the strongest incentives to make good use of their personal budget and generally maximise value for money more effectively than commissioners. Nevertheless, concerns about fraud and abuse are frequently raised in the context of personalization. There is almost no evidence internationally of significant fraud and abuse and programmes can be designed to maximize accountability. For example, PHBs can be held by a third party rather than being directly paid to individuals in the form of a direct payment to increase financial control. This may be appropriate where individuals have, for example, serious addiction issues.