Frontline Initiative Changing Roles

 Five years ago, my friend Cory decided that he wanted a home of his own. Cory already owned his own car, and he had a steady job at a local supermarket. But, what he really wanted was a home of his own, in his hometown, and near his parents’ home so he could continue the close relationship he enjoyed with them. He shared this desire in conversations with his parents and with his community case manager. He and his father set out to work within the system to find a way to make his dream come true. To make what could be a long story much less excruciating, three years ago, Cory moved into his own home using creative financing and with the participation of supportive direct support professionals (DSPs).

The evolution of the disability rights and self-advocacy movements within the disability community have brought about significant changes in the roles of DSPs and the types of services they provide to individuals with disabilities. More and more, DSPs are required to provide support services that enable the empowerment of people with disabilities, and not merely provide the traditional direct care supports we have known since the beginning of the deinstitutionalization movement in the late 1960s. Even the role of personal care attendants (people who provide in-home supports to people with disabilities and the elderly) is changing, moving from the traditional medical model to a more consumer-directed approach that ensures individuals with disabilities the ability to self-direct their daily care and supports.

It is believed by many that the traditional model creates situations that promote long-term dependence and deny individuals who receive supports a direct decision-making role in determining the course of their lives. The evolving consumer-directed model, evidenced at more than 450 Centers for Independent Living Nationally (NCIL, 2001), as well as other community direct service provider agencies, allows individuals with disabilities to have a more direct say in deciding the contents of their individual support plans (also known as habilitations plans or service plans).

The role of DSPs is also changing dramatically in classrooms, community-based settings, residential services, and social services settings that provide services to young people with disabilities. Because of the increasing attention being paid to transition services, young adults with disabilities are often connected to community supports at earlier ages. Supported employment and individualized day supports are also more prevalent, resulting in DSPs working in diverse settings and striving to meet the unique needs of people with disabilities. Families also have different expectations that have resulted in changing roles for many DSPs. Often families want the DSP to support their son/daughter or brother/sister within the context of the family and within the specific community in which the person lives. Additionally, families want assistance from DSPs in making community connections, and establishing new relationships and friendships. 

How can DSPs effectively prepare themselves for these changing roles? First, be informed. Learn more about the principles and practices of the Independent Living (IL) movement and consumer-directed supports. The principles of the IL philosophy are at the heart of the self-advocacy movement and can make DSPs aware of the expectations held by many individuals with disabilities about the services they need and want and how they should be delivered. You can visit your local Center for Independent Living (CIL) to learn more about this, and to gain insight into consumer-directed services model. If you are unsure of the location of the CIL nearest you, contact the National Council on Independent Living (NCIL) at www.ncil.com. If there is not a CIL located in or near your community, you may wish to search out a local branch of a self-advocacy organization like People First (primarily focusing on issues important to individuals with developmental disabilities), TASH (www.tash.org), your state office of your State Council on Disability (SCD) and/or Developmental Disability Planning Council (DDPC), or the National Council on Disability (NCD). Becoming aware of the philosophy and activities of such organizations will give you powerful insight into the national self-advocacy movement. 

Second, talk and listen to people with disabilities. Many individuals with disabilities will be forthcoming about their needs and wants. It is up to us as DSPs to listen and act on their statements. Many people with disabilities have been taught to be compliant in order to avoid retaliation or removal of services. No one should live under fear of retribution, particularly people requiring support services to live their lives, people who have historically been subjected to worst kind of dehumanizing treatment, and people who have been isolated. It is up to DSPs to listen to the people they support and to work with their employers to create new service models that respect individuals with disabilities. Even if you believe you and the agency for which you work are providing high quality services (and you probably are), it means little if the person who receives those services is never asked about unique needs, preferences, and level of satisfaction.

 Third, read. There are numerous publications available that will give you additional insight into the self-advocacy and disability rights movements and the new demands these place on DSPs. Reading material can be found at your local CIL, from the University of Minnesota’s Institute on Community Integration, and from the National Association of Paraprofessionals. You can also check with your local university or community college to determine if they offer any classes for DSPs. Increasing your skills and competencies in providing quality direct services is important for your career development and to ensure that your capabilities in providing the most up-to-date, state of the art community based services.

Finally, choose. As a DSP you can encourage successful community inclusion for individuals with disabilities. I also know that the decisions you make daily as a DSP about the way you choose to interact with individuals with disabilities are critical. It is up to you, the individuals working on the “frontlines,” to ensure an environment that promotes dignity and choice for individuals with disabilities. If the environment is not currently one that guarantees simple forms of consumer choice, ask yourself a question, “What am I willing to risk today?” Are you willing to take a risk for another person’s fundamental dignity? I hope so, because it is truly the DSPs that will make the difference. Legislatures can pass all the laws they want, administrators can make all of the policy decisions they choose, and boards of directors can come up with all the fancy slogans they wish. Believe it when I tell you, it is up to the DSPs to make the real difference. So, that is my final piece of advice: be willing to take a risk.