Getting Support

The goal of this article is to give you new information and resources that can help you become more comfortable and confident. We’ll begin with some basics about who can help you and what laws protect you, focusing on several important resources:

Later in this article, we’ll go into detail about different health care programs, cash benefits, job adjustments and training that can help you.

Friends and family

This article includes many resources and programs, but the biggest resource that can help you may be the one that’s already closest to you: your friends and family. They are the people who know you best, who have helped you over the course of many years, and who will continue to help you in the future. They are also your primary source of emotional support. Furthermore, they are the keys to having an enjoyable life, because in the end, it is our relationships with our friends and families that make our lives fulfilling.

Independent Living Centers

Independent living is one of the most important concepts for people with disabilities. Independent living means you decide how you want to live. It does not mean that you have to know all the answers or do everything by yourself; it means you need to learn how to find resources that can help you reach your goals. You also need to learn to be in charge of how you use these resources.

Independent Living Centers are a one-stop shop that can help you learn how to live independently.

What they offer

Independent Living Centers were created by people with disabilities. They offer many types of information and support that can help you think about decisions you may face and opportunities you may meet.

Independent Living Centers can help you find things like work, housing, transportation, or Personal Care Assistance (PCA) services. They also offer counseling related to benefits, health care, finances, and even your social life.

How you find one

There are Independent Living Centers throughout the country, including dozens in all parts of Missouri. The Missouri Statewide Independent Living Council (MOSILC) can help you find an Independent Living Center near you.

When they’re a good option

If you haven’t already contacted your local Independent Living Center, you should do so now, just to become familiar with the sorts of resources, activities, and programs they offer.

Your Doctor

It's important for you to have good communication with your doctor, because you and your doctor will be working together to come up with ideas and solutions that work well for you.

What your doctor offers

Your primary care doctor is a central partner who will help you better understand your disability. Your doctor will help diagnose your condition, figure out what sort of treatment is available, and refer you to other specialists who can help you. Your doctor also documents your health conditions and keeps your medical record, which can be important if you apply for benefits like Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), and MO HealthNet.

That means it is important for you to regularly visit your doctor to make sure your medical record is kept up to date. When you apply for disability benefits, you can also ask your doctor to supply you with a letter describing your health conditions and disability. You can include that letter with your application. You can also request your own copy of your medical records and include it with your application.

How to get the best help from your doctor

Communication is the most important part of your relationship with your doctor. You need to clearly tell your doctor how you feel. You also have to explain what your needs are. At the same time, you need to understand the recommendations your doctor makes. If you don’t understand something your doctor recommends, ask your doctor to explain it in a different way.

Likewise, if you find you don’t understand some information, insist that your doctor give you the information in a format that you can understand. For example, if you are hard of hearing and the doctor wants you to watch a video that doesn’t have captions, insist that your doctor give you a copy of the video with captions or supply the information in an alternate format. Or, if your first language isn’t English and you want an interpreter to help you understand your doctor, ask for an interpreter. Health care providers are required to supply interpreters and accessible documents.

By having a primary care doctor with whom you are comfortable and have established clear communication, you will be able to deal more effectively with your medical issues. Learn more about establishing a good relationship with your doctor.

When your doctor is an important option

Your doctor has specialized knowledge and knows a lot about your health conditions. Listen to your doctor and think about your doctor’s ideas and suggestions. Make your doctor a part of your team that helps you figure out the many different ways in which you can adapt to your new disability.

Doctors are a great support in many ways but they are not experts about everything. Most importantly, you are the person who knows best about how you feel. That’s why you have the final say in any decisions involving your health. Your doctor’s job is to support you, not tell you what to do.

The medical model and the social model

Our ideas about disability are shaped by the attitudes towards disability in our society. Traditionally, people have thought about disability as a medical issue. This “medical model” looks at your disability as though it is a medical condition that must be cured. If you have a disability, you need to be “fixed.”

However, the disability rights movement has changed that perspective. Now, disability is viewed as a social issue. This “social model” says the problem is not your disability, but the way society views people with disabilities. Disability is a natural part of the human experience; it’s a normal part of life.

Thinking about disability in this new way may help you realize that you don’t need to be fixed. You can live with your disability and be successful. What you need is to find ways to continue to live a satisfying life. When you talk to your doctor, keep this perspective in mind.

For more information about these 2 approaches to disability, click here.

Personal Care Assistance

Personal care assistants (PCAs) support people with disabilities to live more independent lives. An assistant works directly for the person with a disability.

What they offer

The role of a personal care assistant is to help you be able to do what you need to do. Your assistant may help you with getting dressed, going from one place to another, preparing meals, bathing, or other activities.

Personal care assistants can also help you in the workplace to do different types of tasks. They can help with personal care, like in the restroom or at lunch breaks, or with job-related tasks, like help with reading, interpreting, lifting or reaching work materials, or with travel between work sites.

How you find one

Some people with disabilities rely on family or friends for their personal care assistance. Others decide to hire someone who works for an agency. You can find good PCAs in a number of different ways, including Independent Living Centers, PCA agencies, or online.

If you qualify for MO HealthNet, it may pay for personal care assistance services if you need them. When you apply for MO HealthNet, they will assess your situation and decide whether you need personal care assistance in addition to health coverage. If you do, you will be able to sign up for these services through the Consumer Directed Services (CDS) program. Contact your Family Support Division (FSD) office for more information.

When they’re a good option

Personal care assistance can be crucial to your ability to live independently. Personal assistants can help you at home or in the workplace, depending on your needs.

Read more about personal care assistance in the DB101 article on Job Supports and Accommodations.

Home care

Personal care assistants (PCAs) are one type of home care which may be supplied by MO HealthNet, depending on your situation. Home care can include skilled nursing, home health aides, and PCAs. The key thing about all of these types of home care services is that they can help you continue to live in your own home instead of in an institution or group home.

Your Rights

There are several major laws designed to help people with disabilities. The main one is the Americans with Disabilities Act (ADA). The ADA is a federal civil rights law that makes it illegal to discriminate against people with disabilities. It also guarantees that disabled people have access to public services, such as transportation and voting, and to public places, such as restaurants, stores, hotels, and other types of buildings.

What they mean

The first section of the ADA (often called Title I) applies to employment. It makes it illegal to discriminate against qualified jobseekers and employees with disabilities and requires employers to make reasonable accommodations available to jobseekers and employees with disabilities, unless doing so would result in undue hardship to the business. The law applies to all aspects of this employment, including the job application process, hiring, firing, advancement, compensation, job training, and work-related events. In Missouri, the Missouri Human Rights Act (MHRA) also protects people with disabilities.

Perhaps the key difference is that the ADA only covers employers with 15 or more employees, while the MHRA covers employers with 6 or more employees. Both laws apply to private employers, state and local governments, employment agencies, and labor organizations. The ADA does not apply to tax-exempt private membership clubs or the U.S. federal government. However, the Rehabilitation Act of 1973 is another law that is almost identical to the ADA and does apply to federal agencies. That means that the federal government also cannot discriminate against job applicants and employees with disabilities.

How they help you

The ADA and the MHRA are helping you all the time. Here are some examples:

  • If you watch TV with closed captions, those captions are mandated by the ADA.
  • If you go up a ramp when you enter a public library, that ramp has to be there thanks to the ADA.
  • If you have a job and need a computer program that can read webpages, email, and other documents to you, the ADA requires that your employer supply this software.

The ADA can also help you if you are being discriminated against, since it allows you to file a complaint or even go to court.

When you have to take action

If you are treated worse or unequally because of your disability, you are being discriminated against. The ADA makes discrimination illegal. Here are a few examples of how you could be discriminated against at your job:

  • You could be intentionally denied opportunities or benefits, like a job, a promotion, or a competitive salary.
  • You could be unintentionally denied these opportunities or benefits, because your employer uses a practice or a system that is not justified by the needs of the business.
  • You could experience:
    • Coercion, which means forcing you to do something against your will
    • Intimidation, which means frightening or bullying you to follow the employer’s demands
    • Harassment, which means bothering you with unwanted actions or demands, or
    • Interference from enjoying the same privileges and benefits of employment that others get.

Intentional discrimination happens for many reasons. For example, when an employer does not want to pay for your reasonable accommodations or looks down on you because you are disabled, the employer may do something unfair to you on purpose.

Unintentional discrimination usually happens because an employer evaluates or promotes employees in a way that puts disabled people at a disadvantage. The employer usually does not mean to discriminate and does not realize that certain actions or practices are discriminatory.

If you believe that you have been discriminated against because of your disability, you can file a complaint with either the Equal Employment Opportunity Commission (EEOC) or the Missouri Commission on Human Rights (MCHR).