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Finding Your Way Around Organizations Serving the Disability Community

Learn about how government agencies are structured and steps you can take to make your interactions more effective

When you are looking for answers or support, sometimes a major hurdle can be simply working out who does what, who to contact, and how to get a response. On this page you will find some basic concepts to help you get started with navigating state and federal government organizations that serve the disability community. We also suggest steps you can take to make your interactions more effective and hopefully reduce some common frustrations.

Table of Contents

The structure of government and other organizations that serve the disability community

A common misconception is that government is one big organization with all parts seamlessly communicating with each other. The mass.gov website provides content from many different state agencies: although it is useful to read about them in one place, be aware that these agencies are separate and do not usually share consumer information with each other. 

The programs offered by different agencies will each have separate application processes and eligibility criteria. The definition of disability depends on context, and there is no single entity to certify someone as a person with a disability for all programs/circumstances. Sometimes, qualifications for one program can be used as evidence when applying for another program, e.g., proof of receiving low-income or disability benefits might be used to apply for a reduced utility rates program. 

Government organizations operate at federal, state, and local levels and are typically focused on a particular demographic, an area of life, or a government function, such as enforcement of laws. 

There are state agencies that provide resources, services, and guidance for people living with specific disabilities, such as the Massachusetts Commission for the Blind (MCB) and the Developmental Disabilities Services (DDS). Some agencies serve the wider disability population for specific areas of life, e.g., the Massachusetts Rehabilitation Commission (MRC) has several divisions including vocational rehabilitation and community living. 

Most agencies that focus on a particular area of life serve people with or without disabilities, e.g., the Department of Elementary and Secondary Education (DESE) focuses on school, MassHealth focuses on healthcare for low-income MA residents, the Department of Housing and Community Development (DHCD) for housing. These sorts of agencies can be good to consult about resources, services, and sometimes also enforcement in that topic area. 

There are agencies that administer benefits, such as the Social Security Administration (SSA) at the federal level and the MA Department of Transitional Assistance (DTA) at the state level. Although having a disability can be an aspect of eligibility for some benefits, many of the financial assistance programs are open to any individuals or families with very limited income.

Programs offered to the disability community can be administered at the federal, state or local level, e.g., Social Security Disability Insurance at the federal level, vocational rehabilitation at the state level, and Councils on Aging operating locally in a city or town. Federal programs may have local offices and delegate parts of their process to state organizations. For example, SSA is a federal agency with local offices that process applications and delegate medical disability evaluations to local Disability Determination Services (DDS). It can help to ask which level or specific office is going to be best able to answer your question: sometimes a local office may have more up-to-date records. 

This schematic provides an overview of how state agencies are structured.

There are also many non-governmental organizations (which may receive public funding) providing valuable support, such as local legal aid agencies, the New England ADA Center, and Centers for Independent Living. There is a vast range of organizations dedicated to creating community and support for people living with specific disabilities.

Problem resolution and enforcement

Complaints are a special situation. Note there are three main avenues to address an issue:

  1. Informal problem resolution. This is often the first step: a problem may be handled informally with the organization where the issue occurred, e.g., by explaining the problem to a direct contact or a supervisor and asking for it to be addressed.
  2. Formal problem resolution. Larger organizations may have a formal process to evaluate complaints and work to resolve them. For example, the Department of Elementary and Secondary Education (DESE) has a Problem Resolution System. Sometimes the problem resolution is handled by an external organization, e.g MOD’s Client Assistance Program (CAP) can help address matters related to Vocational Rehabilitation and Independent Living services.
  3. Formal complaint to an enforcement agency. This option is suitable where a law/regulation has not been followed. Enforcement agencies will investigate from a place of neutrality, and often have specific procedures and timelines to follow when filing a complaint or an appeal. They may not investigate all complaints filed and the process can take months.  Enforcement agencies are in charge of upholding laws, although this may be just one of many roles that they perform, e.g., the federal Department of Housing and Urban Development (HUD) provides rental assistance and enforces the Fair Housing Act.  Where complaints are filed depends both on the topic area and whether the issue is directly disability-related. For example, a person with a disability might lodge a consumer complaint at the Massachusetts Attorney General’s Office, just as a person without a disability would. Sometimes there are enforcement options at both the federal and state levels. For example, an issue of non-compliance with the Americans with Disabilities Act (ADA) might be made at the federal level with the Department of Justice, or at the state level through the Massachusetts Commission Against Discrimination. 

MOD can help people understand their options for recourse and what the relevant enforcement agencies are for the situation.

Where to find out about organizations online

Before you begin your research, work out the topic area and whether your situation is directly disability-related. This will help you evaluate the appropriate organization to contact.

Many services are offered at the state level, so this can be a good place to start. You can use mass.gov to understand which state agencies focus on what you need. You can begin by exploring the drop-down menus on the home page to see if there is an item related to your topic area. Otherwise, use the search bar to enter specific terms related to your questions or needs. If your issue is not directly disability related, you do not need to use the word “disability” in your search. Note: to identify which agency a mass.gov page is connected to, look for the words ‘OFFERED BY’ between the navigation and the body ("main region" in screen readers) of the page. 

Another reputable source of state level information is the Citizen’s Guide to State Services.

Some state agencies serve a specific population within the disability community. Familiarizing yourself with their offerings and eligibility criteria will help you know when to go to those agencies for tailored support. 

MassOptions provides a personalized service connecting elders, individuals with disabilities, and their caregivers with information on direct services that can best meet their needs.

MOD's disability rights topic pages provide links to key government organizations that provide guidance, services, or enforcement in that area. Our disability laws booklet outlines the laws applicable for different topic areas and the relevant enforcement agencies

You can access an overview of disability-related federal services and benefits on the usa.gov website.

Exploring your town/city website will help you understand what occurs at the local level. It may also point you to local organizations offering services and support.

There is an enormous range of non-government organizations that provide support, information, services, charitable donations, and community building. You can identify them using a basic internet search.

What to consider before contacting a government agency

Here are steps you can take to make contacting supporting organizations easier:

  1. Identify what you need as clearly as possible:
    • What topic area is it in? e.g., employment, housing, financial assistance.
    • If you are looking for information, what are your questions?
    • If you are looking for support, what specific needs are you hoping to meet?
  2. Evaluate if your question is directly disability-related or not: 
    • Not disability related: the question may involve a person with a disability but the question itself is not directly linked to the disability. In this case, you can contact an agency that serves the wider population and is not focused solely on disability.
    • Disability related: question is directly linked to disability.
    • Note: How disability is defined can depend on context. Programs and services might have different eligibility criteria. 
  3. Determine which office to contact for each of your needs: 
    • If you are following up on a letter, email, or phone call, check to see who it was from and contact them. 
    • For new inquiries, please refer to the above section titled “Where to find out about organizations online.” For people without internet access, the MassOptions phone number (800) 243-4636 can be a useful starting point. 
    • If you are looking for local services, begin by contacting the most local office. 

Tips for effective interactions

Here are some other aspects that may be useful to keep in mind as you go about this:

  1. Upon contacting an organization, double check that it is the right place to get your questions answered. 
  2. Begin by clearly and briefly stating your inquiry. Wait to give detailed information until the organization asks for it and then follow any guidance about what information is needed. Try to provide factual information rather than commentary and put it in chronological order. 
  3. If you have specific communication needs, express this as soon as possible. If you have a vision, hearing, or speech disability you are entitled to Effective Communication under the ADA.
  4. Keep records and document important interactions in writing. It can be particularly useful to note dates, names of people, agreements made, and follow-up actions.
  5. Be aware of deadlines and find out about options before a situation becomes an emergency. Many organizations cannot provide immediate responses and some programs, such as affordable housing or Social Security Disability Insurance, may take months or years from application to the start of the benefit. There can also be deadlines for making complaints or appeals. 
  6. Laws, regulations, and program guidelines broadly indicate what should happen, but do not guarantee what will happen in real life. When civil rights are violated, a way to address the situation is to file a complaint. This hopefully educates the parties involved and encourages them to follow the law in the future. However, as the complaint process is often lengthy and involved, it can be helpful to take steps to avoid having a complaint as the only option. In difficult situations it can help to be clear what your most important goals are, inform yourself and communicate clearly. 
  7. If you are in a situation where you want to file a complaint, it can help to:
    • make sure you have followed any recommendations on what you should do in your situation
    • collect clear records of what has happened
    • find out if there is a formal problem resolution service, and if so, what their deadlines and processes are
    • if you believe a law/regulation has not been followed, find out what the relevant enforcement agency is and what their deadlines and processes are for filing complaints.
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