Getting Support

The goal of this article is to give you information and resources that can help you become more comfortable and confident about changes in your life caused by your progressive disability. 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 talks about 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. Often they are the keys to having an enjoyable life. It is our relationships with our friends and families that can make our lives fulfilling.

Disability Hub MN and MinnesotaHelp.info

Disability Hub MN links Minnesotans with disabilities to information and community resources to stay independent, support work, and explore benefits. The Hub helps people with all types of disabilities, including health conditions, drug or alcohol problems, or mental health needs. The Hub is statewide, free, and private (confidential).

MinnesotaHelp.info can also help you find many social services, ranging from benefits applications to job counseling.

What they offer

If you call Disability Hub MN, a counselor will answer your call, listen to your needs, explore possible options, and supply you with the information you need to make informed decisions.

Disability Hub MN specializes in disability questions related to:

  • Work and work planning
  • Benefits and services
  • Housing
  • Accessibility
  • Assistive technology
  • In-Home services
  • Disability rights

MinnesotaHelp.info is an online directory that can help you find social services near you. These services can include help with benefits applications, job counseling, and finding support groups.

How you find them

You can call Disability Hub MN at 1-866-333-2466. To see MinnesotaHelp.info’s wealth of information, click here.

When they’re a good option

Minnesota offers many great resources for people with disabilities. Disability Hub MN and MinnesotaHelp.info can help you connect to the counselors, organizations, and programs that can support you as your disability progresses. They should be your first point of contact as you look for services and support.

Independent Living Centers

Independent living is one of the most important concepts for people with disabilities. Independent living means that 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 that you can learn how to find resources that can help you reach your goals. You also can 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 the decisions and opportunities you may face.

Independent Living Centers can help you find things like work, housing, transportation, or Personal Care Assistance 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 8 in Minnesota. To find an Independent Living Center near you, click here; then go to the “Search by Keyword” tab and type “Centers for Independent Living.”

When they’re a good option

If you haven’t already contacted your local Independent Living Center, you should do so, just to become familiar with the sorts of resources, activities, and programs Independent Living Centers offer. Even if your disability does not mean that you need disability benefits, reasonable accommodations, or disability-related services right now, your local Independent Living Center can help you learn about what you may need in the future. It is also a good place to get support from peers with disabilities similar to your own.

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 now and in the future as your disability changes.

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, discuss how it may develop in the future, figure out what sort of treatment is available that can help you now and what you should prepare for, and refer you to other specialists who can help you.

Your doctor also documents your health conditions and keeps your medical record up to date, which can be important if you apply for benefits like Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), and Medical Assistance (MA).

It is important for you to regularly visit your doctor to keep tabs on how your disability is progressing and to make sure that your medical record is kept up to date. When you apply for disability benefits, you can also ask your doctor to supply a letter that describes your health conditions and disability. You can submit that letter with your application. You can also request your own copy of your medical records and submit 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 about how you feel. You also have to explain what your needs are. At the same time, it is very important to understand the recommendations that your doctor makes. If you don’t understand something, ask your doctor to explain it in a different way.

If you find that you don’t understand some information – 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 a different form. 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 with your medical issues much more effectively. To learn more about establishing a good relationship with your doctor, click here.

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 the team that helps you figure out the many different ways in which you can adapt to your disability as it changes.

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 and that’s why you have the final say in any decisions involving your health. A doctor’s job is to support you, not tell you what to do.

The Medical Model and the Social Model of Disability

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 that 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 that help you continue to live a satisfying life and adapt to how your body changes. When you talk to your doctor, keep this perspective in mind.

To read more about the social model and the medical model of disability, click here.

Personal Care Assistants

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 persons who work 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 Medical Assistance (MA) or Medical Assistance for Employed Persons with Disabilities (MA-EPD), these programs can pay for Personal Care Assistance services if you need them. When you apply for MA or MA-EPD, they will look at your situation and decide whether you need Personal Care Assistance in addition to health coverage. To read more about how MA or MA-EPD can help you pay for these services, visit the Minnesota Department of Human Services' PCA page. You can contact your county human services agency to apply.

When they’re a good option

Personal Care Assistance can be crucial to your ability to live independently. Personal Care Assistants can help you at home or in the workplace, depending on your needs. You may find that you do not need an assistant now, but as your disability changes, you may need one in the future. Alternatively, you may find that the duties you need your PCA to perform change over time as your disability-related needs change.

To learn more about Personal Care Assistance, read DB101’s article on Job Supports and Accommodations.

Home Care

Personal Care Assistants are a type of “home care.” Home care, which may be supplied by MA or MA-EPD, depending on your situation, can include skilled nursing, home health aides, and PCAs. The key thing about all home care services is that they can help you continue to live in your own 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 supplying the accommodation would result in undue hardship to the business. The law applies to all aspects of employment, including the job application process, hiring, firing, advancement, compensation, job training, and work-related events. In Minnesota, the Minnesota Human Rights Act (MHRA) also protects people with disabilities in employment as well as housing, public accommodations, public services, education, credit services, and business.

Perhaps the key difference is that the ADA only covers employers with 15 or more employees, while the MHRA covers all employers, no matter how small the business. 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 United States 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 web pages, email, and other documents to you, the ADA requires that your employer supply this software.

The ADA and the MHRA 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. For example, you are being discriminated against if your employer:

  • Doesn’t give you the same job opportunities or benefits as nondisabled co-workers because of your disability
    • For example, you don’t get a job, a promotion, or a fair salary
  • Retaliates (gets back at you) because you asserted your rights under the ADA
    • For example, you are treated badly because you asked for an accommodation or complained about discrimination
  • Coerces you, which means forcing you to do something against your will
  • Intimidates you, which means frightening or bullying you to follow the employer’s demands

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 Minnesota Department of Human Rights (MDHR). You can also get legal advice from the Minnesota Disability Law Center (MDLC).

To learn more about the ADA and how to file a complaint or lawsuit, read DB101’s Know Your Rights and Responsibilities article.

Getting Organized and Planning

Getting organized and planning are keys to making sure that you are able to handle the changes that come as your disability progresses. Here are a few things that you can do to get better organized:

  • Keep a file with information about your disability and any benefits you get. DB101’s Going to Work Toolbox has many good ideas about ways you can keep track of your medical care and of your income, so that if you need to apply for benefits, you’ll be ready.
  • Learn about resources and people that might help you in the future. Use this article to get an idea about the resources that are available. Then, contact the ones that you think sound like they could be useful in the future. If you aren’t sure where to begin, try out DB101’s Chat with a Hub expert feature.
  • Practice clear communication with your employer’s Human Resources department, your doctor, your family, and other people you trust. It is important for you to clearly communicate what your needs are. As you read this article, think about the things you need to discuss with different people. You may need to talk about some topics now, while you can address other topics at a later time.
  • Become a strong advocate for your life and independence. It is important that you learn to adapt to your changing situation, so that you can continue to lead your life even as your disability progresses.