DD Act Report

There was a time not so long ago when people with Developmental Disabilities (DD) did not have any rights. They did not have the right to go to school, apply for jobs, or go to the places in the community that they wanted to. Many were forced to live in large institutions where they were sometimes abused by their staff.

That began to change in 1963 when the first Developmental Disabilities Assistance and Bill of Rights Act, also called the DD Act, first became law. It was revised in 2000. The Act is meant to help people with DD have good lives in their communities. It also has help for their families. It’s about the rights of people with DD in the United States. Those rights include being part of the community, having friends, and doing work that is important. It’s especially about the right to have control over choices and decisions in their lives.

The Act explains what we know about people with DD. It also describes what needs to be done to make things better for people with DD.

The first part explains how states get money for services to people with DD. It has rules about how states may use the money.

The DD Act has many other rules to make sure that the tax dollars used to help people with DD are spent wisely. This means the people in charge need to keep good records. They need to make reports to Congress about how the money helps people with DD and their families.

The money in the DD Act is used to help each state make things better for people with DD. There are four main activities it’s used for. These are:

State Councils on Developmental Disabilities. These are made up of self-advocates, family members, professionals, and state officials. They decide the goals for their states. They help the state agencies make life better for people with DD.

State Protection and Advocacy organizations. These are systems that use laws and rules to protect people with DD. They have lawyers and other professionals to make sure the rights of people with DD are not violated. Every state has one.

University Centers for Excellence in Developmental Disabilities. A Center is a place at a university that studies what people with DD need. They may also have training programs. Researchers and other staff at the Centers work to make life better for people with DD. Every state has at least one.

Projects of National Significance. These are programs that create and test new ideas to help people with DD and their families.

The Act also provides money for family members to provide care and support and for direct support workers.

What We Know

The Act has a lot of information about rights. It says that people with DD have the same rights as everyone else. They have the right to take part in everything their communities have to offer. This means having control over how and where they live. They also have the right to decide what work they will do. Plus, they have the right to make important decisions about their lives.

The Act says that people with DD have the right to be treated with dignity and respect. They have the right to help shape the programs which provide them with services and support.

Because the DD Act is a federal law, everyone in the United States needs to understand these rights.

Lots of information about people with DD is included in the Act. For instance, more than three million people with DD live in the United States. That’s about 1.5 percent of all the people.

Most people with DD have trouble with some major life activities that will likely last all their lives. The troubles might be with self-care. They might be with language or learning. They might be with walking, seeing, or hearing.

The term developmental disability in the DD Act means a serious condition that will not go away. The condition may be in a person’s body or mind. It appears before the person is 22 years old and it limits what the person can do in important areas of their life. The person may not be able to take care of himself or herself. The person may not be able to share thoughts or feelings. The person may have trouble learning. The person may have trouble moving. The person may not understand what he or she needs. The person may not be able to live alone. The person may not be able to earn money. All of these and more may be part of developmental disability.

More people need to learn more about people with DD. Most people outside the disability community don’t know what people with DD can and can’t do. New programs should help everyone know more about people with DD.

We know that people with DD are abused and neglected more than most people. There are many kinds of abuse. It can be physical like people being hit or kicked. It might be emotional, like when people are called names. The abuse also can be sexual or about money. There are ways to keep people from ever being abused. There are ways to help people who have been abused, and to make sure it doesn’t happen again. They might need more information. They might need to learn new skills. They might just need more chances and help. Many people with DD don’t get the services they need to protect them.

Each person with DD needs different kinds of support. There’s no set of services they all need or want. Some are babies. Some are children. Some are adults. People with DD are of all races and backgrounds. They may live with their families. They may live with housemates. They may live in their own homes. They may live in institutions. All of them need some help, whatever it is. Many of them need special services. Caregivers of people with DD may also need some services.

It’s the job of states to assist people with DD and their families. States provide services to help them get around. They also help with health services. States help people with DD get special devices they need. The devices may help them at home, at school, at work, or in the community. States help them and their families get child care.

Other things states do help people with DD find and keep jobs. States make sure they have access to social lives. States find them good housing. States make sure they are protected.

All of these make the lives of people with DD better.

We know that when the services are provided, people with DD are more healthy and safe. They make some or all of their own decisions. They also become more active members of their communities. That helps everyone.

What Needs to be Done

Some changes are needed in the way services are provided. There are lots of different groups or agencies that provide services. The people who provide the services must talk to each other, even if they are from different places. Sometimes the people who provide the services all have the same kind of background, but it’s better for everyone if their backgrounds are different from each other. It’s best if their backgrounds are like the backgrounds of the people who get the services.

Some of the people who provide services are not as well trained as they should be. All of them can use more training or new training. There also are not enough people to provide all the services needed. More people need to be hired to provide services.

Sometimes good records aren’t kept by the people who provide services. The records must show what help is given. They also must show how the services improve the lives of people with DD.

The Rights of People with Developmental Disabilities

The Act lists the rights of people with DD. All of the rights are important. The Act makes it against the law to take rights away from people with DD.

People with DD have the right to care that is good for them. They have the right to services that help them. They have the right to training or education. Government funds may only be given to people and programs which protect these rights.

People with DD have the right to services which give the most opportunities. They have the right not to be held back or mocked.

People with DD have the right to services that meet their needs. The services might be at places run by the state. The services might be provided by private companies. They include school and training programs. The people who provide services must be sure that the services match the needs of the people with DD they are helping.

People with DD have the right to be free from neglect and abuse of any kind. Sometimes they are at greater risk because they have to rely on others for help.

People with DD have the right to the medical and dental care they need. It’s the right to have help to travel to see a doctor. It’s the right to see doctors that can help the most.

People with DD have the right not to be tied up or limited in their movement just because of their DD. They have the right not be locked away alone. People with DD may not be punished this way, even if someone thinks it will help them learn. Some of the rules are different for people with DD who are a danger to themselves or others.

People with DD have the right not to be given too many drugs. They may not be given drugs as punishment. They may not be given drugs instead of the services they need. Any drugs they are given may not make it harder for them to get the care they need.

People with DD have the right to talk to close friends and relatives or guardians when they want to. There’s no need for the visits to be set up ahead of time.

People with DD have the right to programs that help them the most. They have the right to expect that the programs follow all the laws.

People with DD have all of the rights listed above. They also have all the rights other people in the United States have.

Putting the Act into Action

The Secretary of Health and Human services is in charge of making sure the government does everything promised in the Act. He or she must make sure states keep good records. The Secretary makes sure that states get better at providing services. The Secretary also keeps track of what programs the states develop. The Secretary makes sure that programs start by the dates stated in the Act.

The reports show states’ progress in several ways. One part shows the general progress of people with DD, including their happiness about services and the changes in their activities. Also important are the choices they have and their access to services. Finally, the reports must show how people with DD are protected.

The Secretary must have a committee to oversee federal programs for people with DD. The committee must include people from four agencies and meet regularly in open, public meetings.

The Secretary decides what records are required, and states must record how money received from the federal government is spent in detailed reports of each service.

The Secretary must report the progress made by the states. The report must be printed in the Federal Register each year.

Every two years the Secretary must write a full report for the President and Congress on the work done under the Act . It must list what services the states have provided. It must show how the lives of people with DD are better. It must show that their rights are respected. It must include how people with DD are protected. It must tell about deaths and harm to people with DD. Finally, it must list problems in the programs that provide services.

Money

The Act gives states money to protect the rights of people with DD. Each state may get a different amount, depending on how many people live in the state, how much help the state needs and on how many people in the state are living with DD.

The Act sets the minimum amounts of money each state should receive. It says when or why the amount may vary. The Act also says that states may keep money they don’t use one year to use it the next year.

The Act warns that states can’t use the money to pay for services states already provide. States must not spend less state money when they get money from the Act. The money from the Act is to provide more services and more protection.

A state must have a few things before it gets money. First, the state must have a state DD Council. The state must also say which state agency will support the Council. Next, it must make a five-year plan that must be approved by the Secretary.

The plan of each state must say exactly what kinds of support there are to help people with DD get good jobs, health care and other services.

The state plan must show how people with DD are helped by the services in the plan. It must show that people with DD are part of their communities. It must show that some of the money goes to areas that often get few services. It must also show how many people with DD aren’t getting the help they need.

All state plans must protect the rights of people with DD. The states must make sure that people with DD from minority groups get the help they need. The plan must protect people with DD from abuse or neglect. The plans must protect people with DD from being given drugs they don’t need. The plans must make sure that people with DD are allowed to have visitors.

All people in each state have the right to say what they want in the plan. The Council decides if those things will be included. All state DD plans must follow all the rules of the Act. They also must follow all the laws of the state.

State Councils on Developmental Disabilities

Members of each state Council are appointed by the Governor of the state. The members must live in the state. People with DD and those who care about them may recommend members to the Governor.

Members of the Council must be from all parts of the state.

Here are some actions a Council may make:

• Arrange or support training for people with DD and their families. The training may also be for the people who support people with DD. Those people may be teachers, students, volunteers, and other members of the public. 
• Reach out to the community to make sure that all people with DD are able to get help. 
• Work to remove the barriers that stop people with DD from being active in their communities. 
• Encourage local networks to help people with DD. A Council can show the local networks how to make it easier for people with DD get the services they need.
• Help agencies across the state work together to help people with DD. It also may work with other Councils and federal groups to help people with DD.
• Teach community members what people with DD are able to do. It may teach the public what people with DD want. It also may teach the public about what people with DD need.

State Protection & Advocacy Systems (P&As)

The Act helps fund state Protection and Advocacy Systems. These systems use laws and rules to protect and advocate the rights of people with DD.

Protection and Advocacy offices have lawyers and other staff who know the laws about disability rights very well. They are available to help when people with disabilities are abused or neglected by those who are supposed to provide them with support. They can also help when people don’t get services they have a right to and need to be successful. These lawyers are available to help people with disabilities and families who are having trouble getting special education supports or supports to live and work in the community.

University Centers for Excellence in Developmental Disabilities Education, Research, & Service (UCEDDs)

University Centers for Excellence in Developmental Disabilities, sometimes called UCEDDs, provide leadership for people with DD. They teach the public about people with DD. They advise the government and others about people with DD. They come up with new ways to help people with DD make their own decisions and be included in public life.

The Centers teach people to how to be strong leaders and help people with DD receive great services The people they teach may be people with DD, families members, or direct support workers who serve people with DD. They may also be policy makers, students, and members of the public.

The Centers do research in the areas that matter to people with DD. They tell people what they learn through their research to make things better for people with DD and families.

Projects of National Significance

In addition to the grants provided to University Centers, the Act funds programs that benefit people in many states at the same time. These are called Projects of National Significance. These programs must help people with DD be part of public life. They include family support activities. They include ways to make sure people from racial and ethnic minorities get their fair share of help. They may include ways to help people with DD move from school to adult life. They may include ways to help people with DD as they become older. They may include training programs for people with DD and ways to make it easier for people with DD get the services they need.

Family Support

One part of the Act is about family support. In this part of the Act, “families” means families who care for people with DD. It says that lots of families support and care for people with DD. This support and care saves states millions of dollars. Most of these families don’t get as much help as they should. Better health care means that people with DD live longer than they used to. That means that sometimes family members are too old to continue to help.

Sometimes the help that families need is money. Sometimes it’s time off. Sometimes it’s other types of support.

The goal of this part of the Act is to do more to support families. It’s to help people with DD stay with their families. It’s to help the families and the people with DD make the best choices.

The Secretary may give grants to states to improve support for families. As usual, there are lots of rules about the grants. The rules cover how states apply. They explain how much money the states can ask for. They cover what the states can do with the grant money. They say what reports the state must make about the grants.

The Secretary decides if the states that get these grants are following the rules.

Direct Support

The Act includes money to help direct support workers get money. Direct support workers are people who provide care and services to people with DD.

Direct support workers are often young adults. There are not enough direct support workers of any age. One reason is that there are fewer young adults than there used to be. Another reason is that more direct support workers are needed. An important reason is that direct support workers are poorly paid. Besides poor pay, direct support workers usually get only a little training. They also usually aren’t able to be promoted in direct care jobs.

The Secretary gives scholarships for direct support workers. The Act lists the rules about the scholarships. One rule is that an agency or group must apply for the scholarships for direct support workers. The scholarships are to help the direct support workers become better at their jobs.

Why is the DD Act Important?

The DD Act is an important law for people with DD to know about and understand. It says that people with DD have rights, and explains what those rights are. It says what the United States government has decided must be available to each person with DD. It also explains three important programs available in every state to protect the rights of people with DD. It talks about what everyone should expect from each of them. These are:

• The Developmental Disability Council, which sets up a plan every five years and advocates for changes to help all of the people with DD in your state. 
• The Protection and Advocacy organization, which helps people with DD when their rights are being ignored, and 
• The University Center, which does research and training to help everyone understand what helps people with DD have good lives. According to the DD Act, that means people can make important choices, speak up for their rights, have good jobs, and be part of their communities.

These three programs help people use their rights to have good lives.