Analysis
We begin with a quote from Robert Wood Johnson Foundation – “The Self-Determination for Persons with Developmental Disabilities Program was a national program that began in 1996 to help 18 states implement 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. ” The Robert Wood Johnson Foundation (RWJF) Board of Trustees authorized the program in November 1995 for up to $5 million.
Under the grant, the program ran a pilot that changed the way it provided assistance to a group of 45 developmentally disabled individuals:
● Individuals controlled planning for their own support needs, with the assistance of family and friends they designated (often referred to as a circle of support).
● Individuals each controlled a sum of public money that they had the authority to spend on residential, vocational and personal needs.
● Individuals could contract directly for any and all services through individual contracts.
● Individuals could purchase supports from whomever they chose, rather than being limited to providers with whom program had contracted.
As a result the independent evaluators reported an improved quality of life for the participants, and a cost savings of 12 to 15 percent, even for the most severely disabled participants.
Based on the positive results of the pilot the program has defined four principles of self-determination that had become the cornerstones of Self-Determination programs in our country. These principles are :
- Freedom, the opportunity to choose where and with whom one lives as well as how one organizes all important aspects of one’s life with freely chosen assistance as needed.
- Authority, the ability to control some targeted amount of public dollars.
- Support, the ability to organize that support in ways that are unique to the individual.
- Responsibility, the obligation to use public dollars wisely and to contribute to one’s community.
Central to achieving these principles the program had recommended the following structure:
● Person-centered planning – each individual:
— Defined his or her needs.
— Learned about the services, providers, and options available.
— Received assistance in planning the services and supports that answer those needs. The individual could designate family and friends (a so-called “circle of support”) to help in decision-making.
● Independent support brokerage – self-determination provided for use of independent professionals (brokers) who helped individuals and their families identify their needs and find services and providers who can meet those needs.
● Individual budgets. States self-determination projects allocated a pool of money that the individual could use to pay for the services and supports he or she chose.
● Fiscal intermediaries. An individual or family could designate a fiscal intermediary to act as business agent, purchasing services and managing wages, taxes, fringe benefits, accounting and compliance with labor and tax regulations.
The Self-Determination Program also has established main objectives for participating States:
● State policy reform, to include:
— Changing quality assurance and financial monitoring requirements to be consistent with self-determination principles.
— Enlisting legislative and executive branch support.
— Redirecting the use of non-Medicaid funding to further program goals.
— Helping to identify necessary federal policy changes.
As we examine the evolution of the program we’d like to bring attention to the simplicity of the initial Pilot – this simplicity resulting from simply replicating the ways that our system of consumers and providers works – a person receives the money and does with it as they wish and plan.
The subsequent 4 cornerstone principles while clearly commendable nevertheless offer a departure from equality and simplicity – by imposing ableism constraints that subsequently result in a structure that is unwieldy, costly, and subject to manipulation and abuse.
The state policy reform in most states has not proceeded in earnest either – limiting the scope and the ways that the program can be implemented. It is extended only to a small proportion of disabled population [not touching people in institutions and commonly the families of low income] while it as usual diverts most of the funds to a newly created service venues of autism industry.
As an example the “MICHIGAN DEPARTMENT OF COMMUNITY HEALTH Behavioral Health and Developmental Disabilities SELF-DETERMINATION POLICY & PRACTICE GUIDELINE” is a 93 page document outlining arrangements required of the disabled person to exercise their self-determination. This involve PIHP/CMHSP [the administrative body], preapproved Fiscal Intermediary [a business entity approved by administration], Agents of Choice, preapproved Providers, and above all – the requirement for the individual to be an Employer! We see the same arrangements in Pennsylvania and even more cumbersome in California. All these just to allow a disabled person to get assistance with Household, Transportation, and a few other personal needs.
Compare this to the common consumer ways of accomplishing same by non-disabled person, even a person on welfare! Imagine plain folks requiring to register as employers and paying hordes of expensive business and government entities who are continuously wasting yours and their time while producing, analyzing, verifying, reporting, and filing massive amounts of laborious paperwork in order to ensure your prudency and the complicated compliance for the purpose of you to just go shopping, use transportation, or other common or even less common services!
Per our analysis under the current guideline the Program has been effectively stagnating nationwide and unless redefined will not succeed!
Here we quote one of the pioneers of the disability movement – “In my work through the National Leadership Consortium on Developmental Disabilities I have realized that there is no organizational home for people committed to self-directed lives and the shift from congregate services (those provided to people with disabilities in group homes, day programs and sheltered workshops) to those offering real, full, meaningful lives that respond to the wants and needs of each person.
I am saddened by how little supports for people with disabilities have changed since I began to work in this field in the 70s. ”
Nancy Weiss – Director of the National Leadership Consortium on Developmental Disabilities at the University of Delaware
Solutions
And yet the Self-Determination Movement is alive and people are seeking change.
In 2000 at the bequest of individuals with disabilities, The Center for Self-Determination, at a time led by Thomas Nerney, one of the principal directors of RWJF National Program for Self-Determination, has added a 5th Principle of Self-Determination:
“Confirmation – the recognition that individuals with disabilities themselves must be a major part of the redesign of the human service system of long term care”.
This 5th Principle we see as the central principle in our struggle for self-determination! And with that let us draft our solution beginning with the following Guideline:
- Simplify – there is no need for reinventing the wheel – the approach to solution must be same as it is for any other individual – it should follow a consumer-provider model. A person receives monetary funds and spends it. The funds are received ether for work performed or due to disability as qualified – whether from employer or the State.
- A person must be an empowered person protected by the law and should be allowed same rights with their money and choices, including the choice of paid or unpaid Support they may need. A person chooses what they need and how to arrange for their needs.
- The State must allocate funds directly to an individual covering all the supports they been determined to need including for Supported Decision Making, Broker support, accounting, etc. [paperwork will be minimized and mostly generated automatically]. When a person is a child parents shall be responsible for managing the funds on behalf of the child.
- Self-determination for Disabled must begin in childhood – as it is for all the children. Freedom, Authority, and Responsibility are not acquired in isolated environments – unconstrained self-directed [facilitated and supported when needed] integration into community from early childhood is a necessary part of self-determination.
The above guideline is simple and follows the customary ways our service economy works. When there is a consumer need and money for services, brokers, accountants, etc. – these services would spring out as is with market oriented economy. This guideline is same for all the states – this is a Nationwide Guideline. This model is of highest value to disabled individual by giving them same universally accepted access to services and same consumer rights as customary to all the people. This is also a most cost effective solution that one can hope to implement. It eliminates all the overhead in the current governmental spending.
Furthermore we make a recommendation to enact legislation that would provide a year of child-caring sabbatical [with a guaranteed return to work and partially paid by private insurance] for a parent nurturing a disabled child in early stages.
This not only would help in the development of a healthy and happy child which is essential for child’s development but also would foster the erasure of stigma as a common psychological phenomena of redefined and elevated value.
The other recommendation is in regard to person to person supports including non-contractual, ad-hoc, and auxiliary – specifically provided by disabled, retired, youth, and young people in transition, including family and friends. The exchange of money for services via account-to-account [using smart mobile based apps] should be exempt from taxation [subject to transactional and cumulative checks] and shall not affect any other benefits by either party.
This would foster the much needed involvement of local unemployed and underemployed populations while supporting the community integration and self-determination of disabled people. The use of smart highly configurable Assistive Technology [AT] would help oversee the prudency, identify and report abuse, and curtail improper use.
How can we accomplish this for all the Disabled, including people under guardianship, housed in group homes and institutions, as well as stigmatized captives in their homes? How can we transition them to freedom? What should be the road to emancipation? This is our next topic.
