Imagine buying a house without looking at any others on the market, or taking a new job knowing nothing about the company, or buying a car without a test drive, sight unseen. In the real world we don’t make major investments without information, without asking questions, without seeing, touching, experiencing… But in the world of developmental disabilities, such unsupported decision-making is the rule not the exception.

TheArcLink’s goal is to provide resources that empower individuals with disabilities and their families to make sound choices about services that support their full participation in the community. Empowering people to choose is not simply providing information, but giving individuals the opportunity to interact with others with similar needs and experiences.

For more than fifty years, families facing disabilities have advocated together for better systems of support and inclusion through The Arc, a national organization on mental retardation. Collectively these families have accomplished great things. All children are now entitled to a free, appropriate public education. Adults who were previously institutionalized hold jobs, own homes and vote. Persons with disabilities are recognized as citizens with all of the rights and responsibilities of other citizens.

Yet there remains a persistent lack of choice as state service systems retain major control of access to information that persons with disabilities and their families need to make good decisions. The everyday task of survival in the community can be daunting for individuals with developmental disabilities and families that have little or no information on available services and supports. Many people do not know how to access services, are unaware of choices that exist, or in the case of residential supports, are unaware of long waiting lists and the importance of applying for services early.

One trend facing persons with disabilities and their families is an increasing opportunity to choose among many service-providers. The era of receiving services 24 hours a day, seven days a week from the only service provider in the community has been replaced by a proliferation service providers, service coordinators, case managers, and entry points. More individuals have the opportunity to piece together their support options, selecting therapies from here, employment support from there, and housing options from yet a third source. The opportunity to participate in a market and exercise self-determination increases the perceived value of the decision-maker.

This process has some glaring weaknesses. Information must be accessible. With so many new providers, there are very few controls for quality assurance. Once given the opportunity to choose, on what criteria do you base a decision? In some cases, families don’t even have access to an up-to-date list of providers in their area from which to choose, much less information about these providers. And if you have to move from one community to another or one state to another, the search for information and guidance about quality is even more challenging. Suddenly you are faced with different funding sources, different coordinating agencies and different systems of service delivery. State agencies struggle to keep records up-to-date and to make accurate information readily available. But more times than not, a family will have to speak with multiple agencies many times to get the answers to their most important questions.

TheArcLink provides an information source: a comprehensive database of approved service providers, service coordinators and entry points by state. Initially, services covered will include any adult or children’s service for which a state must approve a provider. Consumers can access basic information about every state-approved service-provider and additional customer satisfaction information about providers who have specifically committed to TheArcLink standards of quality. In addition, individuals and families can network with people receiving services to share experiences and advice about specific providers, services and state systems. Beyond simply an information resource, TheArcLink connects individuals facing common concerns, challenges and experiences, empowering them to interact in a virtual community where location and ability are immaterial.

TheArcLink Incorporated: 320 West Eighth Street, Suite 126, Bloomington IN 47404-3747. Telephone (812) 323-0626, Fax (812) 323-0726, Toll-free 1-877-431-8532. Email [email protected]