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Challenges |
People First members face many challenges in their lives. As individuals members face issues each day in areas such as labeling, housing, employment, transportation, medical care, personal Isolation and lack of social activities. Learning how to be a self-advocate and working individually and with others on these issues is an important part of People First.
The following articles from our chapter handbook provide more information on the importance of self-advocates working together on issues.
We have also started collecting articles and other information on the challenges that face People First members. If you have any information to share please send it to us and we will include it here.
America’s society is changing with people living longer and in better health. Older people have become a larger percentage of our nation’s population. Better health, coupled with greater numbers, is resulting in more healthy adults with developmental disabilities surviving into old age.
People who are aging need community supports and services. In too many communities, developmental disability support systems and generic aging services are not prepared to accommodate the needs of older adults with developmental disabilities.
The following address some of these issues:
Articles
"Assistive technology" is the term used to describe devices and services that are used by children and adults with developmental disabilities and other disabilities to enhance and increase independence, mobility, communication, environmental control and self determination. It also refers to direct services that assist individuals in selecting, acquiring or using such devices.
People with developmental disabilities too often do not have access or use of assistive technology because:
- others perceive they are unable to use it;
- consumers, parents, employers and professionals have insufficient training to evaluate and apply current technology;
- human and financial resources to make use of the technology are not available;
- designers and manufacturers often do not consider their unique needs;
- information about technology is often unavailable to consumers with developmental disabilities, their families and support providers; and
- devices are not adequately maintained and repaired.
The following address some of these issues:
Articles
- Assistive Technology for People with Developmental Disabilities
- How to Evaluate and Select Assistive Technology Devices is a fact sheet and checklist developed to assist people with developmental disabilities and their families make informed decisions evaluating assistive technology devices
Web Sites
- Center for Accessible Technology (CforAT) provides information and services supporting technology use that respects individual differences, encourages each person's right to make informed choices and builds the community's capacity to support the assistive technology user.
- CAST (Center for Applied Special Technology) is a non-profit organization that uses technology to expand opportunities for all people, including those with disabilities.
- Ability Hub is a web site for people with a disability who find operating a computer difficult, maybe even impossible. The site will direct you to adaptive equipment and alternative methods available for accessing computers.
- People First of Central England has been a pioneer in the area of online communication using e-mail. They have a e-mail group for self-advocates to talk to each other and one for self-advocates and people who support them to talk. Sign Up Information
- Speaking for Ourselves is a self-advocacy group has two articles on using computers and the internet on their web sites: Computer Tips for People with Disabilities and Learning the Web
- NW ADA/IT provides information on the Americans with Disabilities Act and accessible information technology in Alaska, Idaho, Oregon and Washington.
Individuals with developmental disabilities who become involved in the criminal justice system as victims, witnesses, or defendants are more likely to face injustice if the system does not consider their disabilities and capabilities.
Among current major problems:
- Fear, prejudice and lack of understanding of people with developmental disabilities exist and are magnified when they become involved in a crime.
- Most attorneys, judges, law enforcement personnel, and citizens serving on juries lack the knowledge and skills necessary to ensure that people with developmental disabilities obtain justice.
- Appropriate investigations and expert testimony to ensure adequate representation are costly. Since most people with developmental disabilities have limited resources, investigations and expert testimony may not be available.
- Incarcerated (in jail or prison) people with developmental disabilities are particularly vulnerable to abuse and exploitation.
- There are few organized and recognized resources for information, training, technical assistance and referral for people with developmental disabilities when they encounter the criminal justice system.
- People with developmental disabilities involved with the criminal justice system encounter problems that are caused by their disability, such as:
- Failing to have their disability identified by authorities because the individual is attempting to hide developmental disabilities;
- Giving incriminating, but inaccurate "confessions," because the individual wants to please or is confused or misled by inappropriately used investigative techniques;
- Being found incompetent to stand trial because the individual cannot understand the criminal justice proceeding;
- Being found incompetent and being inappropriately placed in an institution for a long period of time in order to "regain competency";
- Being unable to assist their lawyer in their own defense;
- Waiving rights unknowingly in the face of required warnings such as Miranda;
- Being victimized by the criminal justice system because their testimony is not deemed credible whether as a witness, victim or defendant.
- Tests created to determine if people with mental illness know right from wrong cannot and should not be applied to people with developmental disabilities.
- Statistics and other information reflecting the involvement of individuals with developmental disabilities as victims or defendants in the criminal justice system are incomplete.
The following address some of these issues:
Articles
People with Developmental Disabilities in the Criminal Justice System has statistical information on people with developmental disabilities in the criminal justice system
People With Developmental Disabilities and Sexual Abuse is an article about sexual abuse of people with developmental disabilities
Criminal Justice Policies Toward the Mentally Retarded Are Unjust and Waste Money is a RAND abstract brief
Know Your Rights If You Get Arrested has information for self-advocates on what to do when in contact with law enforcement and/or the courts
Guidelines for Law Enforcements Officers describing their responsibilities under the ADA and how to effectively work with people with developmental disabilities
Guidelines For Court Workers including attorneys, judges and other court personnel describing their responsibilities under the ADA and how to effectively work with people with developmental disabilities
Access to Justice for Victims With Developmental Disabilities is a web site developed in an effort to improve the ability of chapters of The Arc and victim assistance agencies throughout the country to respond effectively to victims with mental retardation and other developmental disabilities
Impact: Feature issue on violence and women with developmental or other disabilities published by the Institute on Community Integration
Newspaper Articles
Court Bars Execution of Mental Retarded is an article from the Washington Post June 21, 2002
Retarded Offenders Lost in Courts is an article from the Cincinnati Enquirer - April 8, 2001
Equal Justice Eludes People With Developmental Disabilities is a press release from the University of California at Irvine - August 3, 2000
Web Sites
Mental Retardation and The Death Penalty provides information and links on the ongoing battle to ban the death penalty for people with mental retardation.
The Individuals with Disabilities Education Act (IDEA) provides that all children with disabilities, including developmental disabilities, be educated to the maximum extent appropriate with students who are not disabled. However, problems of segregation persist. Students with developmental disabilities may not have access to the same academic and extracurricular programs and services provided to other students. The curriculum may be outdated and not based on individual needs. Young people with developmental disabilities typically leave schools unprepared for adult life and face unemployment, underemployment and waiting lists for adult services.
Special education programs are under-funded and lack sufficient, trained personnel. Students with disabilities are usually overlooked in educational reform movements. Federal monitoring has historically found state and local education agencies to be non-compliant with IDEA.
The education of students with disabilities has been under assault on numerous fronts by the press, school officials and the public. Expenditures on behalf of students with disabilities are seen as taking away resources from non-disabled students. A small segment of our citizens oppose providing educational opportunities to children with severe developmental disabilities.
The following address some of these issues:
Articles
- IDEA (Individuals with Disabilities Act) articles:
- The Individuals with Disabilities Education Act (IDEA):
Early Intervention Services for Children Birth Through
Age Two- The Individuals with Disabilities Education Act (IDEA): Eligibility, IEPs and Placement
- The Individuals with Disabilities Education Act (IDEA): Procedural Safeguards and Due Process
- The Individuals with Disabilities Education Act (IDEA): Transition from School to Work and Community Life
Web Sites
- CET (Council for Exceptional Children) Today offers articles on special education including several articles on the disproportionate number of students from diverse backgrounds in special education
The majority of adults with developmental disabilities are either unemployed or underemployed, despite their ability, desire and willingness to engage in meaningful work in the community. For those who have been employed, many have been in sheltered settings for most of their adult life. For some people, individualized on-the-job supports are necessary to join the work force. Insufficient effort and resources have been dedicated to make these supports available to meet the need. Employment issues such as wages, benefits, advancement, retirement, etc., that are a natural part of the lifelong career development process have usually not been addressed for people with disabilities.
The following address some of these issues:
- The Americans with Disabilities Act (ADA) and Working is a booklet for people with developmental disabilities explaining Title I of the ADA (employment) and what to do if discrimination occurs
- Questions and Answers About Employment of People with Developmental Disabilities
Adequate housing is a major issue for many Americans. Finding a place to live that meets one's needs, is in a suitable location and is affordable are problems for everyone. But people with developmental disabilities face additional problems including accessibility and discrimination.
For many years when a family needed services for their child with developmental disabilities, their only option was to seek residential placement in the only setting available -- an institution. Although conditions may have improved in such facilities, they have continued to demonstrate a lack of success in providing a quality of life similar to that which is available in the community. It is well documented that institutional environments have many and serious adverse effects on the individuals who live there.
Public policy has not kept pace with the movement to community. This hinders the development of individual and family supports and services that allow children and adults with developmental disabilities to thrive in their home communities. While size alone cannot be used to measure quality, one indicator that services may not be truly individualized is when people with developmental disabilities are forced to live in groups larger than average family size. It is now clear that such supports and services can be tailored to give individuals with developmental disabilities the opportunity to grow and develop in their home community regardless of the severity of their disability.
The following address some of these issues:
Articles
- A Home of One's Own is a Community Integration Report on home ownership by people with developmental disabilities
- Making a Move is an article with advice from People First members about helping people move out of institutions and nursing homes
Web Sites
For many years when a family needed services for their child with mental retardation, their only option was to seek residential placement in the only setting available -- an institution. Although conditions may have improved in such facilities, they have continued to demonstrate a lack of success in providing a quality of life similar to that which is available in the community. It is well documented that institutional environments have many and serious adverse effects on the individuals who live there. People First supports the closing of institutions.
The following address some of these issues.
Articles
A Chance to be Made Whole: People First Members Being Friends to Tear Down Institution Walls is an article by People First of Tennessee members.
Fairview: The Closing Chapter tells the story of the closing of Fairview Training Center in Oregon.
Ten Top Arguments Against Closing an Institution lists the arguments people give who want to keep institutions open and gives reasons why they aren't valid
Web Sites
DAWN: Closing the State Centers for the Developmentally Disabled
Dawn is a statewide grassroots cross-disability network of people who care about disability issues. The Wisconsin Council on Developmental Disabilities funds DAWN as part of the State Plan on Developmental Disabilities.
Labeling is an ongoing issue for People First members. The underlying principle of People First is that developmentally disabled people want to be known as people first and not defined by their disabilities. "We want others to know that we are people first,
and our disabilities come second" If the label comes before the person then a large part of who that person is has already been defined.People with developmental disabilities are labeled by their families and by the communities they live in but they are also labeled by the support systems that are suppose to serve them. Despite clear indications from People First and other self-advocacy groups that the words mental retardation should be "retired," support professionals and agencies that oversee support systems continue to use the term.
The official explanation is that it is impossible to provide the necessary assistance to people who need it, without defining who is eligible (i.e., creating a label). By its very nature service provision hangs onto labels in order to know where to best put resources. The dilemma of dropping all labels and still accurately describing who can receive supports through State agencies is an ongoing debate and still not solved. But there is a clear mandate from the people who receive these services and supports that people—not labels—must always come first.
The following address some of these issues:
Articles
Medical and Dental
People with developmental disabilities have frequently been denied access to appropriate medical and dental treatment due to their disability. There are health care professionals who refuse to serve individuals with developmental disabilities. Examples include withholding life-saving surgery, denying organ transplants and refusing to treat burn victims.
People with developmental disabilities sometimes die because doctors, parents and other decision-makers impose do-not-resuscitate orders or refuse to authorize medical treatment or provide food and/or water. These decisions are often based on the disability itself, on the perceived "poor quality of life" of the individual or for economic reasons, rather than on the individual's medical condition.
There is often a reluctance to provide medical and dental treatment due to a lack of knowledge and understanding of best practices in treating people with developmental disabilities. Providing medical and dental treatment is further complicated by inadequate, uneven and arbitrary rates of reimbursement through Medicaid and private insurance companies.
The following address some of these issues:
Articles
- Physical Fitness in People With Developmental Disabilities
- Facts About Hepatitis B and Developmental Disabilities
- HIV/AIDS and Developmental Disabilities
- Mental Illness and Developmental Disabilities
Newspaper Articles
- Mentally Retarded Get Inferior Medical Care is an Associated Press article - December 6 2001 by Surgeon General David Satcher
- Mentally Retarded Get Substandard Health Care is an ABC News report - March 5 2002
Web Sites
- The National Center on Physical Activity and Disability is a web site with the goal to encourage and support people with disabilities who wish to increase their overall level of activity and participate in some form of regular physical activity
Additional articles on medical issues and aging can be found in the Aging section
Personal Isolation and Lack of Social Activities
People with developmental disabilities must have the opportunity to participate in the same recreation and leisure activities that are available to all citizens. Currently too many opportunities are limited to segregated activities. With the passage of the Americans with Disabilities Act, community recreation programs have begun responding to the needs of people with disabilities to have access to inclusive recreational opportunities.
However, many people with developmental disabilities are not aware of these opportunities and how to obtain access to them. In addition, many recreation professionals continue to lack basic understanding of developmental disabilities and the strategies and techniques for including these individuals in recreation and leisure programs.
Furthermore, lack of understanding and acceptance of people with developmental disabilities by the general public, and particularly by non-disabled participants in community recreation and leisure activities is a major barrier to successful inclusive recreation.
The following address some of these issues:
Articles
- Supporting Children and Youth with Disabilities in Integrated Recreation and Leisure Activities
- The Importance of Friendships Between People With and Without Developmental Disabilities
- Friends Make a Difference
- Making Friends Within Inclusive Community Recreation Programs
- Personal Relationships, Illness, and Disability
Newspaper Articles
Hard Journey for the Developmentally Disabled is an article from the Oakland Tribune - August 1, 2001
Web Sites
- People and Places is a non-profit organization that provides year-round vacation opportunities for people with developmental disabilities. Contact them for information and a brochure of their trips.
Children and adults with mental retardation must have access to services and resources that are available to all other citizens. Finding, obtaining and coordinating these services and resources to meet the entire range of personal needs and preferences necessary to assure quality of life in the community is not an easy task.
The lack of community services and supports cause huge problems. Disabilities can become more severe; learning can be delayed; individuals can become more dependent and isolated; skills, self-esteem and productivity can decrease; families can be severely strained, and some parents are afraid to die because no one else will take care of their sons and daughters.
The following address some of these issues:
Articles
Shaping Our Destiny: Consumer's Guide to Quality Community Services
An AAMR consumer's guide outlines how people with developmental disabilities and their families can advocate for and evaluate quality services.Shaping Our Destiny: Provider's Guide to Quality Community Services
An AAMR provider's guide details how service providers can provide quality supports that keep consumers' needs a priority.Individual Service Coordination for Individuals with Developmental Disabilities
Managed Care and Long Term Services for People with Developmental Disabilities
Managing Grief Better: People with Developmental Disabilities
As time passes, choices in transportation methods increase for individuals with disabilities. Drivers with disabilities can rent cars and vans with hand controls and wheelchair lifts. The workforces of people with disabilities have options for their commute. Fixed route systems, para transit, and commuter system are more accessible today than ever. Travelers with disabilities can choose planes, trains, and automobiles in deciding the preferred mode for business or pleasure.
Even though there are more opportunities today, it does not mean that the various methods of travel do not need improving. Strong vigilance and active participation in transportation systems are needed in order to improve and expand transportation opportunities for individuals with disabilities.
The following address some of these issues:
Articles
Standing in the Cold: Mobility and the Mentally Challenged is an article by the Alliance for Transportation Research on the need to provide assessment and public participation to enhance mobility for the developmentally disabled.