By Jessica M. Joyce, LMSW
I currently work with the most amazing and misunderstood population. The MR/DD population, for many years, was kept in isolation. Then they were released to the streets after the break-up of facilities such as Willowbrook. This population still faces the stigma, of being “strange” and “different.” Each day that I sit down with my clients, I learn more about the beautiful and innocent parts of life.The obstacles that they face each day from the systems they must deal with to get services are disheartening. One of these obstacles is that school districts circumvent the system, by offering them fewer services so they can fund other programs, such as sports. I have an autistic client who has been sent to different mental health facilities for behavioral issues, when services such as speech and counseling would aid her to function academically and socially. Because these services were not offered in the schools, my client was left into dark corners of mental health facilities with clients who had severe psychiatric disorders. This did more harm than good. When offered services such as day habilitation, she is fearful that she will be sent to another psychiatric facility.
I have another client who did not feel safe in the academic environment and would act out behaviorally. The first intervention was to “take him down.” Once a joyful individual, he now has medical complications resulting from the “take downs,” and he is scared of people. This was someone who enjoyed interacting with others and now has a fear of contact.
The limited funding for social services is quick to go to alcohol/drug and psychiatric facilities. These facilities need assistance, but so does the MR/DD population. The most frustrating part is the limited help our clients get from the government. Yes, the ADA has been instrumental in helping consumers assimilate into society, but other services must be made available. Waiting lists for homes for individuals with disabilities are years long. An important part of our work with this population is for those who can function independently or need minimal assistance to be given opportunities to live and work in the community as independently as possible. As most young adults “leave the nest,” so should our clients who are able to do so. The resources to help our clients gain their independence are limited. There should be more funding to aid our clients in receiving the assistance they need to obtain their independence.
Today, there is still a huge stigma within society. Numerous times on outings with consumers, I have watched people stare and point. The word “retarded” is thrown around consistently. My higher functioning clients hear this and internalize it, thus leading to self-deprecating thoughts. “I am just stupid—everyone says so.” It is heart-wrenching to hear them have such negative thoughts about themselves. What is equally devastating is that it comes from people in our society. Our consumers had no choice in being born with a disability. It is equivalent to someone getting the diagnosis of breast cancer; they had no choice in that matter either. Instead of embracing their indomitable spirits, society rejects them for who they are. Society tells this MR/DD population what they cannot do, thus leading them to believe they cannot accomplish anything or strive to be anyone. Instead of telling them what they cannot do, encouraging them with messages of what they can do can be extremely uplifting and beneficial. I avoid the word cannot and utilize the word can. “Yes, you can finish that math problem,” or, “Yes, you can get a job.” Changing the way I convey my messages of encouragement changes the ways my clients feel about themselves and what they are capable of doing.
Out of the plethora of interventions and theories out there, using the strengths perspective can change the way clinicians look at clients and the way clients look at themselves. As simplistic as it might seem to point out the strengths of clients, it is extremely valuable to the MR/DD population. We all love to hear positive thoughts from people, and it is very important to the MR/DD population. Even those who have minimal functioning can understand positive and simple messages. It is vital for those who work with the MR/DD population to see clients for who they are and what they can bring, rather than pigeon-holing them into their diagnosis.
Parents and guardians of these individuals are remarkable. Their advocacy and strength is amazing and valuable to their children. Parents and guardians face so many obstacles and issues regarding their children. They must face the emotional repercussions of having a child with a disability. Most people have the “American Dream,” and for the most part, having a child with a disability is not in their plans. They must deal with the special needs of their children: constant medical appointments, academic needs, social needs, and so on. The strength of their parents and guardians is admirable. The constant advocacy on behalf of their children is taxing. Parents of special needs children should not have to fight for the children to get the services and assistance they deserve, but—unfortunately—this is part of their daily lives. Often, having a special needs child dashes the parents’ hopes of seeing their child graduate, go to college, and have a family of his or her own. It is devastating to have hopes and dreams crushed, and then have to fight the system to help a child develop, as much as possible, an autonomous self. Although being a parent is a life-long commitment, the commitment is much more intensive when one has a child with special needs. Parents must decide whether the child will move into a facility for the MR/DD population at a certain age, or stay at home. If they choose to send them to a facility, they may have feelings of guilt that they are giving up on their child. If they choose to keep their child at home, they must be care-takers for the rest of their lives, possibly leading to feelings of not being able to reach their own goals. Parents and guardians should be afforded every possible resource and service available. They are truly heroes, and without them, their children might not be given the most vital assistance to develop their true selves.
Every single day that I work with consumers, I am in awe of their strengths and abilities. I am in wonder of how they see the world. I see the beauty of life through their eyes. If the world could see life like they do, a sense of happiness and fulfillment might be made possible. It is important for the helping profession to help them gain every service, resource, and assistance so they can be a normal part of our society, instead of outcasts.
Jessica M. Joyce, LMSW, received her BSW in 2005 from Stony Brook University and her MSW in 2006 from Fordham University. She works for Community Enterprises in Islandia, NY, which serves the developmentally disabled and mentally retarded population.