Subsections include: Individualized Funding and Self-Determination
*Note: These contents are assembled from several web sites, some of whom are now defunct. Although I have the documents in my records, I've provided the current links to available items. Copies of material from defunct sites, as well as my works, are provided below. Copyright belongs to the authors and/or publishers of the material according to the information contained in the documents. An internet search of the titles or of content from the material should be made for referencing purposes. The owner of this web site only claims authorship where indicated within the material.
A Fair Society: supported living and personalisation (2011) — ideas like supported living and personalisation are important way-stations on the way to citizenship - rather than ends in themselves. See www.centreforwelfarereform.org
A GOOD-PRACTICE GUIDE TO VALUING, RESPECTING AND SUPPORTING SERVICE-USER ACTIVITY-2006 — Endorsed by the National Mental Health Partnership (NMHP)
A Guide To Employing Individual Providers Under Participant Direction (2006) — In this monograph, we discuss program design considerations to assist states as they move toward greater individuality and flexibility in the provision of services and supports for individuals who have disabilities and/or significant functional limitations and require ongoing assistance.
A home of my own - progress on enabling people with learning disabilities to have choice and control over where and with whom they live (2011) — The article examines the work undertaken following Valuing People Now to develop the housing options of people with learning disabilities, including implementing a regional housing programme, developing a good-practice toolkit for local authority commissioners and encouraging provider engagement.
Annotated Review of Selected Consumer Directed Support Studies -2003
An Overview of Changes to the Colorado Home and Community Based Services Waiver for People with Developmental Disabilities (2008) — Persons with Developmental Disabilities Waiver (HCBS-DD) The HCBS-DD Waiver provides persons with developmental disabilities access to services and supports 24 hours a day to allow them to a live safely and participate in their community.
Applied Self Direction — Applied Self Direction provides practical expertise intended to create and operate self direction programs that run effectively and efficiently for individuals, states, managed care entities, Financial Management Services providers, and other stakeholders.
A whole-life approach to personalisation Self-Directed Support for every child and young person (2010) — Since 2003, In Control has developed and defined many of the key elements of Self-Directed Support, including the Individual or Personal Budget, Resource Allocation Systems, the Individual Service Fund, Support Planning and its functional analysis of brokerage.
Compensating Family Caregivers: An Analysis of Tax Initiatives and Pension Schemes (1999) — In Canada, informal caregivers are responsible for 80 to 90 percent of the assistance provided to elderly persons in their homes. With the country’s shift to community care, families are being challenged to fulfill increased expectations of their caregiving role.
Consumer Directed Community Supports Consumer Handbook (2005) — Information will be revised periodically in response to changes in state and federal requirements. 1.2 Consumer Directed Community Supports (CDCS).
Consumer-Directed Health Care: How Well Does It Work? (2004) — This study includes a systematic review of the literature (both print and Web-based) on consumer-directed and -oriented care. It was shaped by guidance from a national consumer advisory board and refined based on interviews with key informants in relevant fields of research, policy, and program administration.
Consumer-Directed Home and Community Services Programs in Five Countries: Policy Issues for Older People and Government (2000) — A major innovation in long-term care for elderly persons in the United States and Europe is the development of consumer-directed home care. These governmental programs give consumers, rather than home care agencies, control over who provides services and how these services are delivered.
Consumer-Directed Services At Home: A New Model For Persons With Disabilities (2001) — Building upon earlier models developed for younger adults with physical disabilities, consumer-directed models are now being adapted to recipients of all ages with federal, state, and foundation support. These models shift responsibility for key service decisions from professionals to recipients and challenge the traditional home care agency model
Consumer-Directed Transformation to a Recovery-Based Mental Health System — This paper provides an outline of how survivor/consumers can catalyze a transformation of the mental health system from one based on an institutional culture of control and exclusion to one based on a recovery culture of self-determination community participation.
Consumer Direction and Choice in Long-Term Care for Older Persons, Including Payments for Informal Care: How Can it Help Improve Care Outcomes, Employment and Fiscal Sustainability? (2005) — This paper reports the detailed results of research on choice carried out as part of the long-term care study under the OECD Health Project, which will be published shortly under the title “Long-term care policies for older people”. For more information about data and analysis of health policy, see www.oecd.org/health.
Consumer-Direction and Self-Determination Symposium--Handouts (2001) — The conference, Independent Choices: A National Symposium on Consumer-Direction and Self-Determination for the Elderly and Persons with Disabilities, is intended to: (1) present research findings and convey the experiences of existing programs and demonstration projects, and (2) identify future directions for policy development and research and demonstration projects which promote effective and responsible consumer-directed service systems for the elderly and people with disabilities.
Consumer Guidebook for Self-Directed Services — Pennsylvania has a rich history of offering “self-directed services” under our home and community based programs. You know best about your own needs and how to address them. Self-directed services let you take more control of your services and give you the power to manage your own services and support service worker. Pennsylvania’s self-directed services are offered via two service models that allow you varying degrees of control based on your needs and preferences. The two models are Consumer-Employer (CE) and Services My Way (SMW).
Consumer Operated Self-Help Programs: A Technical Report. 2000 — This document is a retrospective review of the mental health consumer/survivor self-help movement and, specifically, the findings and recommendations from these innovative demonstration projects. Consumer/Survivor-Operated Self-help Programs, is the first comprehensive documentation of the experiences of consumers/survivors in designing and operating their own self-help programs.
Delivering choice and control for disabled people (2008) — The aim of these changes would be to ensure support is targeted to those who need it most, while increasing the independence and autonomy of disabled people.
Developing and Implementing Self-Direction Programs and Policies: A Handbook 2010 — This Handbook was developed to provide state staff, policymakers, service providers, program participants, and other stakeholders with a single comprehensive source of information about self-direction programs and policies.
Developing Individual Budgets and Reimbursement Levels Using the Supports Intensity Scale April 2009 — In order to better calibrate its Home and Community Based (HCBS) New Opportunities Waiver (NOW) for stability, fairness, and understandability, and to simultaneously move the developmental disabilities service system toward assessment-informed person centered planning and resultant improvements in services, the Louisiana Office for Citizens with Developmental Disabilities (OCDD) chose to explore the use of the Supports Intensity Scale (SIS) as a resource allocation tool.
Feature Issue on Consumer-Controlled Budgets and Persons with Disabilities (2004) — This issue of Impact focuses on various aspects of and experiences with supporting personal freedom through self-directed supports and individually managed budgets. It includes articles from policy, service, and individual/ family perspectives illustrating what is possible when self-determination guides service provision.
Financial Management Services in Consumer-Directed Programs -2007 — In consumer direction, recipients assume the responsibilities of employing their attendants – for both self-directing their supportive services and being responsible for numerous fiscal responsibilities. Many states have eased these fiscal responsibilities among recipients in publicly financed personal care programs by using Financial Management Services (also known as fiscal intermediaries).
guidance on best practice in Self-Directed Support — See http://www.in-control.org.uk/
Home and Community-Based Services: Creating Systems for Success at Home, at Work and in the Community 2014 — the results and data trends identified in the current study address quality of life and community participation issues that are common to people with disabilities of any kind living in the community.
How to Cost Appropriately with Personal Budgets (2010) — Individual budgets are a needs-based allocation of money to service users that can combine several funding sources, such as social care money, independent living and supporting people funds, disabled facilities grants and access to work.
Implementation of Consumer-Directed Services for Persons With Intellectual or Developmental Disabilities: A National Study (2009) — its purpose was to investigate how consumer control is being implemented across states. Additional themes included the exploration of strategies, challenges, and best practices of consumer-directed services and supports.
Implementation of Self-Directed Supports for Individuals with Intellectual and Developmental Disabilities: A Political Economy Analysis 2016 — Although the evidence base for self-direction is relatively robust, there is a significant lack of information on how implementation of self-direction is faring on the national level. The purpose of this study is to understand how the political and economic factors within and across states have impacted the implementation of a self-directed service delivery system.
Implementing Self-Directed Support (2011) — Other useful resources by Simon Duffy at http://www.centreforwelfarereform.org/library/authors/simon-duffy/
In Control — We are a national charity working for an inclusive society where everyone has the support they need to live a good life and make a valued contribution.
Increasing consumer choice in aged care services (2009) — The Brotherhood of St Laurence is committed to ensuring that all older Australians age well with dignity and security. Consumer-directed care offers new opportunities to achieve this goal. This paper reviews international and national literature on consumer-directed care and argues that evidence of improved outcomes for consumers and cost efficiencies warrants a trial of this approach in aged care in Australia.
Independence, choice and risk: a guide to best practice in supported decision making -2007 — This best practice guide is for the use of everyone involved in supporting adults (18 and over) using health and social care within any setting, whether community or residential, in the public, independent or voluntary sectors. This includes all NHS staff working in multi-disciplinary or joint teams.
Individual Support Plan (ISP) Manual for Individuals with an Intellectual Disability 2015 — Developing an ISP is based on the philosophies and concepts of Positive Approaches, Everyday Lives, and Person Centered-Planning that captures the true meaning of working together to empower the individual to dream, plan, and create a shared commitment for his or her future.
Innovative Collaborations between Family Caregivers and Health Care Providers: Literature Review and Environmental Scan Project 2016 — The Change Foundation’s strategic goal is to improve the experience of family caregivers as they help their family member transition through and interact with Ontario’s health care systems (The Change Foundation, 2015). The objective of this literature review and environmental scan was to identify initiatives, programs or interventions within primary care, home and community care and hospital settings where family caregivers and healthcare providers collaborate or partner in care and support. (link opens a pdf file for download)
Introducing personal budgets - what we can learn from other countries 2012 — summarises the available evidence, across five countries – UK, US, Canada, Australia and the Netherlands - on the introduction of personal budgets as an alternative to directly-provided disability services.
It’s your life – take control - The implementation of self-directed support in Hertfordshire — In 2005 Hertfordshire County Council, along with a number of other local authorities, signed up for phase two of an innovative project. The aim of the project was to change the way local authorities organise the support they offer to both older people and those with disabilities, so that each person could design and control their own bespoke package of support.
Medicaid Home and Community-Based Services for Persons with Developmental Disabilities in Six States (2000) — This report summarizes findings and observations of a site visit to Wyoming to view and discuss with key state officials, service providers, program participants and others the implementation, outcomes and challenges of the state’s Medicaid Home and Community-Based Services (“waiver”) program.
Money Follows the Person Demonstration Grants: Summary of State MFP Program Applications (2007) — The Deficit Reduction Act (DRA) of 2005 (P.L. 109-171) made several changes to Medicaid policies governing state financing and provision of long-term care services. Among its other provisions, it created the Money Follows the Person (MFP) Demonstration program under Section 6071 which authorized $1.75 billion to support state efforts to move people currently residing in institutions back into their communities and to rebalance their long-term care systems to emphasize home and community-based services (HCBS) rather than institutional placement.
My Life and Consumer-Directed Community Supports by Nathan Perry (2004) — This is just one small story about what makes consumer-directed community supports (CDCS) such a great support for me in my life. For me it means mostly being more independent and doing the things I want to do and not always the things others think or say I should be doing.
National Guidance on Self-Directed Support - Scotland, 2007 — This national guidance is based on the findings of three national working groups, the recommendations of the Scottish Parliament’s Health Committee Care Inquiry, and a public consultation. It describes simple and effective schemes for self-directed support and is for use by local authority staff, support organisations and service providers. Local authority finance managers will wish to focus on section 9 on the financing of self-directed support.
National Resource Center for Participant-Directed Services — The National Resource Center for Participant-Directed Services (NRCPDS) assists states, agencies and organizations in offering participant-directed services to people with disabilities. We are the only national resource that performs this function.
Overview of Participant-directed Services and Supports Models PPT-2007 — Dswresourcecenter.org Resources in this area. The PPT isn't available.
Participant-Centered Planning and Individual Budgeting (2005) — This State Policy in Practice technical assistance document offers concrete information and specific state examples on ways to implement participant-directed planning and individualized budgeting.
Participant-Directed Services (Guides, 2016) — Participant-Direction means services and supports are directed by the person who needs them. Based upon the principles of self-determination, PDS offers an alternative to how supports are traditionally provided in the ID system.
Promoting Self-Direction and Consumer Control in Home-and Community-Based Service Systems 2006 — From our study of successful programs and the recommendations and guidance of the colloquium participants, we have developed three papers that address these central aspects of the creation of enduring change.
Putting People First: Support planning and brokerage with older people and people with mental health difficulties (2010) — This guide responds to the findings of the Personal budgets pilots evaluation, which concluded that more work was required to develop approaches to support planning and brokerage that work for all groups of people rather than just some.
Resource Guide:Person Centered Planning for Consumer-Directed Care 2010 — This Resource Guide accompanies Mark Sciegaj’s June 23, 2010 presentation at the Supporting Consumers in the 21st Century Conference
Self-Determination and Person-Directed Support By Laurie E. Powers, Ph.D. (2003) — The shift from institutional to community-based services has provided the first real opportunity for many adults with disabilities to make meaningful life choices and to access the services and supports they need.
Self-Determination for People with Developmental Disabilities (2007) — Working toward a more cost-effective system for serving persons with developmental disabilities while simultaneously giving those persons and their families more choice in determining the services they receive.
Self-Directed Funding: An Evaluation of Self-Managed Contracts in Saskatchewan 2016 — This report explores self-managed contracts specifically for individuals with intellectual disabilities. The purpose of this study is to examine the process of developing and managing the contracts, and their impact on the lives of those who choose to pursue this type of funding arrangement.
Self-Directed Support: A Review of the Barriers and Facilitators (Scotland, 2011) — This is a report on the published literature on the barriers and facilitators of self directed support.
Self-directed Support: Sustainability Literature Review (2008, Duncan Blackman)
Self Managed Care Programs in Canada: A Report to Health Canada -2006 — This report for Health Canada describes publicly funded, self managed home care programs at federal, provincial and territorial levels across Canada. In contrast to conventional home care programs in which care is managed and delivered by professionals or agencies on behalf of the client, in self managed programs the client takes a more active and central role both in defining needs and in determining how those needs should be met.
Ten Issues for States to Consider in Implementing Individual or Level-Based Budget Allocations (2009) — This report is the second of two reports HSRI developed for IRLU focusing on the development of assessment informed resource allocation.
The Introduction of Individual Budgets as a Resource Allocation System for Disability Services in Ireland (2011) — This report focuses on the issue of resource allocation of disability funding; it describes the current resource allocation system for disability funding in Ireland and examines the funding mechanisms operating in other international jurisdictions. It concludes with consideration of the issues regarding the implementation of standardised resource allocation processes in Ireland.
The state of social care in England 2007-08 — This information: -Describes trends in the range, quality and availability of social care services in 2007-08 across the public, voluntary and private sectors. -Looks at support to people with multiple and complex needs to see whether these people are benefiting from the new personalised care agenda as described in Putting People First.
The State of the States in Developmental Disabilities 2017 — access financial and programmatic data for mental health, physical and sensory disabilities, and intellectual/developmental disabilities.
Think Local Act Personal (Resources on personalisation) — The Think Local, Act Personal Partnership is comprised of over 30 national and umbrella organisations representing the broad interest in personalisation and community-based support. These organisations, through joining this Partnership, have committed to supporting a small central team in working to improve practice in six priority areas; as well as advising and influencing government and other bodies.
To Pay or Not to Pay: Examining Underlying Principles in the Debate on Financial Support for Family Caregivers -2007 — These include the responsibility to care, economic or social objectives, gender equity, and the autonomy of care receivers. The authors conclude that policy makers need to be cautious about the unintended effects of financial support policy and develop a menu of policies and services to support caregivers. Future policy development in Canada must enable legitimate choice across the life course and ensure that neither the caregiver nor the care receiver will experience short- or long-term financial consequences of his or her choice.
“Self-directed Support - an exploration of Option 2 in practice 2015, Scotland — This report was commissioned by Providers and Personalisation (P&P). P&P is hosted by Coalition of Care and Support Providers in Scotland (CCPS) and funded by the Scottish Government. P&P aims to support voluntary sector support providers to prepare for Self directed Support and influence the development of local and national policy. The research was undertaken and the report written by Dr. Martin Kettle, from Glasgow Caledonian University.
“Self Direction” In Services and the Emerging Safeguarding and Advocacy Challenges That May Arise (Kendrick, 2005) — In recent years we have seen a growing number of examples of service and support options that place the service user in the role of guiding or directing the services that they receive. These options are often broadly called “self directed” services, but this term can be quite misleading as there are, in reality, quite a variety of distinctive ways that these might be implemented in practice, and there are often important differences in how these varying options may function.