The Community and Persons with Developmental Disabilities

by Kathy Lentz, MM

Our world and our communities are becoming more diverse places. We see people from all walks of life, in all shapes, sizes, and colors, all with different experiences, preferences and abilities. People with disabilities are part of our diverse communities. Ever since the de-institutional movement of the 1960s, people with disabilities are participating in all aspects of community life.

Many people were cared for in institutional settings. There were a lot of dedicated people who wanted to provide professional level services to people with developmental disabilities in a safe (“locked”) setting. People in institutions were limited in their ability to belong to the larger community and limited in opportunities for development of social and employment skills. Along with the civil rights movement of the 1960s, the disability rights movement supported the rights of individuals with disabilities to choose where they wanted to live. Thus the movement to community based programs.

Today, the vast majority of individuals with developmental disabilities are in our communities and all but a few institutions have closed. Many individuals and their families, however, need support to adapt and adjust successfully. A wide range of services are available to meet the needs of individuals in their communities.

Professional Supports

Schools
A wide variety of services are available for children with developmental disabilities through their school system. Services for children with disabilities can begin as early as six months of age, depending on the severity of the disability and the child’s developmental needs. Early intervention can help children make more progress in their development. Throughout the school years, children with disabilities are supported through individualized learning plans. Children with significant challenges may have the additional support of professionals such as nurses, physical therapists, occupational therapists, speech therapists, and psychologists through their school. Support and learning plans can be developed for use in both the home and school.

Schools also offer transition planning for all children with disabilities, helping them and their families adapt or adjust to adult years. This may include vocational training and work experiences.

Community Mental Health and Developmental Disabilities Councils
All communities offer services to children and adults with developmental disabilities and their families. These public programs provide a wide range of services and many are provided with governmental support such as Medicaid. There is usually an assessment of the individual’s ability to pay for services (or the parents’ ability to pay for their child’s services). Examples of the services that these public organizations provide are:

Respite Services for children and their families. Sometimes caregiving is a 24-hour, 7-day a week proposition. Families who provide this support need to take care of themselves and to take breaks from the constant demands of caregiving. Respite offers time away.

In-Home Support for children and their families. When children with DD have very significant needs, there are times the family cannot meet all the needs on their own. Nursing support is provided in the home for children with complex disabilities. Home Help Aides are provided for children who need assistance with social or behavioral skills. These types of programs are designed to support the entire family, not just the child with a disability.

Coordination of Services and Benefits. Individuals with disabilities often receive benefits from a variety of sources. Determining the resources people are entitled to, applying for those benefits, and making sure individuals do not lose the support, are critical factors for ensuring continuation of benefits. Service coordinators also help individuals and their families find the type of services they need and qualify for in the connunity. They help put together a comprehensive plan of services and supports for the individual.

Skill Building and Work Programs. programs are available to help the individuals with diabitlities learn job skills, look for jobs, and be successful in their jobs. Basic skills are taught about attending to task and being on time, and job coaches can be provided in the work site to give that extra bit of support someone may need to be successful in his or her job. There are also programs for individuals who are working on more basic skills such as responding to yes/no questions, gross motor skills (grasping, moving) and activities of daily living.

Clinical Services. Often individuals with developmental disabilities have some additional physical challenges. These challenges may require professional support or intervention. An individual who is experiencing difficulty walking or an unsteady gait may see a Physical Therapist to learn and practice walking. A Speech Therapist may help someone who has difficulty speaking and being understood or provide guidance for using assistive communication devices. Psychological services may be needed to address emotional and behavioral concerns.

Community Living Services. There are a variety of public programs that help support individuals with developmental disabilities living in the community. There are a wide range of options, and individuals and families should think carefully about what they would like best and where their needs lie. If help is needed with daily activities such as eating, bathing, mobility, and to be safe, then some amount of direct staff support is necessary. Some individuals need more frequent intervention for social/behavior skills or for their specialized medical/physical needs (i.e. tube feeding, range of motion). Some people are very social and like living with other people. Others prefer more privacy and don’t like to have lots of other people around. People’s homes are one of the most important places to them. It is so important to carefully choose the type of home environment to address these needs and wants.

Communities offer a range of services to help assist and meet the needs of individuals with developmental disabilities. It is critical to research these before choosing the type of services that best meet the needs of the individual with the disability. Each community organization has a method for assessing the needs of the individual and will help point him or her to services that will meet these needs.

Natural Supports

In addition to professional services, it is critical that persons with developmental disabilities feel included in the community. All of the services referenced above represent paid services, either by the individual or through public dollars or programs. There are other ways communities can and do support people with disabilities. As people with developmental disabilities spend more time in their community, they are beginning to become more fully included in their community. They are attending churches, working in grocery stores, belonging to YMCAs, and living in apartment complexes. Belonging to groups can provide a great deal of support to individuals with disabilities. A group can help an individual determine some of the social situations/expectations of the community. A group can also help identify when and where additional support might be needed. Communities are becoming more accustomed to a broad diversity of individuals, including those who look different, use a wheelchair, act different or make different noises. There are more places where people are welcomed and truly invited to join and be a part of the community. There are many examples of these natural supports for individuals with DD in the community.

Churches. Many churches and synagogues and other houses of worship make it a priority to fully include and welcome people with disabilities into their worship. They are included in choirs, have worship groups geared toward their level of understanding, and have help with transportation.

Neighborhoods. There are individuals with DD living in all communities. Children live with their families, adults live in their home or apartment or in group homes. Neighborhoods can provide natural supports to these individuals by including them in all neighborhood activities. Neighborhood Watch programs can help look out for individuals with disabilities.

Businesses. As individuals with developmental disabilities are getting more jobs in the community, all of us are able to interact more. We may have an employee with developmental disabilities in our place of business. They may be helping us at the grocery store or the video store, or greeting us at the Walmart. Their co-workers may help them with rides, figuring out new timeclocks, invite them to work events, etc. Co-workers provide social contact and interaction. As people with developmental disabilities may serve us in the community (grocery store, video, newspaper), we can include them fully by recognizing their contribution, what they do for us. We can look at them, not by them (as we sometimes do to people who are service providers).

Recreation Programs. Many community recreation programs welcome and gear activities to persons with developmental disabilities. Activities specifically geared toward persons with disabilities are becoming more common. Check with your local community education center for more information. Many gyms and YMCAs also welcome and accommodate people with disabilities.

Social groups for children are more inclusive. Boy Scouts and Girl Scouts welcome people with disabilities. School groups welcome all kids. Intramural school sports invite all children to join.

There are many places and ways for people with developmental disabilities to fully enjoy community life. There are professional services and natural supports. We have a great opportunity to be natural supports for someone with a developmental disability. We can go out of our way to greet and make eye contact with a person with a disability – to truly see him or her, not only his or her disability. We can make sure that we welcome all people in our social places and in our homes – all races, all ages, all religions, and all abilities.