Self-Determination: A New Paradigm or a Potential Pitfall

by John E. D'Amico

The last several years have seen the cultivation of a fresh approach to the delivery of services to persons with mental retardation and other developmental disabilities.

The approach which bears the label "self-determination" was developed partly in response to a concern over the dwindling supply of federal and state dollars for support programs and partly in search of a better way of developing support mechanisms. In concept and at least in some early applications, it is hard to argue with the goals, objectives and results of self-determination. But, as parents, friends and care-givers, we must recognize the potential trap that broad based application could create: a willingness to settle for less in the name of freedom of choice.

History. In the early 90’s a number of leading advocates for persons with developmental disabilities began to write and lecture on the need to develop new systems for delivery of long term care. It was recognized that the delivery of medical services in general was undergoing radical change and care providers of the developmentally disabled could not sit by idly while the entire medical community underwent a metamorphosis. The movement focused on the need to develop individual autonomy and increased choice. This is, of course, a logical extension of the achievements of the past twenty years during which we have moved away from institutionalization toward congregate living and supported employment.

In 1993 the Robert Wood Johnson Foundation, one of the country’s largest health care foundations, agreed to fund a proposal from Monadnock Developmental Services, Inc. of Keene, New Hampshire. MDS wanted to expand on its three person trial of individual program development and the RWJ Foundation believed that the self- determination model had potential for addressing the changing demands being placed on long term care. From 1993 to 1996, 45 persons participated in the Monadnock Self-Determination Project which was designed to test the theory that if people with developmental disabilities and those who support them gain control of their lives and resources, their quality of life will improve and the amount of government expenditures sustaining them will decrease. The project was declared successful and the RWJ Foundation went on to establish a National Program Office at the University of New Hampshire Institute on Disability and to fund grant programs in eighteen states, including Connecticut.

What is Self-Determination?   Perhaps the work most often cited on self-determination is the paper written by Thomas Nerney and Donald Shumway of the Institute on Disability who are widely considered to be the architects of the self- determination movement. The paper describes self determination as having four primary characteristics:

The key to this approach is the development of supports which expand greatly upon the current methods of assistance delivery. By tailoring supports to an individual’s needs and allowing them to control the choice and financial aspects of the support systems a new methodology is demanded. Nerney and Shumway recognize that the typical disabled person and their family may not have the ability or acumen to, in effect, run a business. It will be necessary to identify resources, negotiate services and rates, employ and oversee the service providers, deal with the state and federal regulatory aspects of employment and assure quality. Accordingly, they suggest that existing agencies such as the Department of Mental Retardation and their counterparts in other states, provide these services rather than pre-designed support programs. Presumably, these brokerage and financial oversight services could be contracted out by the state departments.

The idea is that with the "business" aspects of assistance for the developmentally impaired taken care of, the individual and his family can focus on the oversight of the actual support. Each person could, with the assistance of an independent broker, seek out the type of supports that are most useful and meaningful to him/her. The provider would be answerable directly to the supported person and his/her family. If the provider was not meeting the requirements of its engagement, the supported individual would be free to seek out other providers. The free market system should result in more efficient and less costly services better suited for the purchasing individual.

The Beyond Managed Care paper provides some examples of how this system could work. One example describes Mary who is on the waiting list for a residential placement. The paper suggests that rather than wait for years for an available position that might cost $50,000, Mary’s family could elect to receive perhaps $15,000 for the purchase of in-home supports. Mary’s family would recruit and hire part time individuals and the supporting agency would provide payroll and tax filing services. The result, according to Nerney and Shumway, would be a less costly, more effective system.

There have already been success stories in Connecticut in the implementation of self-determination. The task of providing individual choice is not an impossible one and with innovation and reform it can become a widespread reality. But changes must be undertaken advisedly and with full aware-ness of the potential ramifications. Complete and absolute self-determination may not be best for everyone and the concept most certainly should not be used to reduce available services or deny services to any individual with developmental disabilities.

Self-determination also requires a new type of consumerism, one which may be difficult for many families. I am reminded of how the breakup of AT&T was supposed to benefit the consumer by doing away with a monopoly which could dictate what services would be available. Well, I suppose in many respects we have benefited as a group by increased initiatives, new products and better pricing. But can you understand your phone bill? Can you decipher which service is best for you or which provider offers the better rates? And how often are you inundated with new offers of service? Even the most educated consumer has difficulty in purchasing a service as basic as a phone. How much more difficult will it be to purchase human services for the developmentally disabled? It’s not that people can’t do it, it’s just that it will be very difficult to insure that the quality of services is maintained and consumers are receiving the best available costs without oversight.

A true free market system will require that individual providers be free to establish rates for the variety of services that will be required. The State cannot continue rate setting if individuals will be truly free to select the services which they deem in their personal best interest. Nerney and Shumway state that "self-determination may be a way to demonstrate ‘how more can be done with less.’" But when they compare the standard managed care strategies of capitation, utilization management and choice restriction, they are quick to point out how self-determination differs from these approaches which have been used to reduce medical costs. If self-determination can reduce costs, it can only be done if providers are allowed to be creative and can eliminate unnecessary overhead and programs. Of course, the potential for abuse exists and without agency oversight (much the same as the insurance carrier oversees a healthcare provider organization), consumers may end up with less rather than more.

The self-determination initiative also should not be used to eliminate choices with which the developmentally disabled and their families are comfortable. The concept should not become a means to advance political agendas such as absolute inclusionism to the detriment of individuals who have benefited from congregate living or work and who, by choice, conclude that these arrangements are what they determine to be in their best interest. Self-determination means that one should have the right to choose what is best for them, even if it differs from what the proponents of self-determination desire as an end result. Our forefathers could not have anticipated everything that the First Amendment has been interpreted to protect, but in their wisdom they gave us the right to choose and were willing to live with the consequences.

"We need to both work together and learn together in order for the four principles of self- determination to have real meaning in the lives of those with developmental disabilities and their families and friends."

John E. D’Amico, Esq.