Caregiver Crisis for Disabled Individuals

There is currently a huge caregiver crisis for disabled individuals in the U.S.

This firsthand account reflects a growing national conversation about the caregiver crisis for disabled individuals in the United States. A Psychology Today article (November 2023) emphasizes the increasing societal burden of adult caregiving, highlighting the emotional and financial stress placed on caregivers. In parallel, Harvard Health (May 2024) brings attention to the often-overlooked impact on caregiver well-being, noting that nearly 75% of caregivers are over the age of 50, and more than three-quarters are women—demographics particularly vulnerable to burnout and health complications. Tackling this crisis demands systemic reform: increased compensation, professional support for caregivers, and policies that invest in home and community-based services rather than defaulting to institutional care.

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Get Your Stuff in Order

Reporting Changes and Preparing for SSI or SSDI Reviews

By David Mervis, Esq., Staff Attorney for Project HEAL (Health, Education, Advocacy, and Law)

Are You Receiving SSI or SSDI?

How to Prepare for SSI and SSDI Reviews- Image of 3 disabled people sitting in a semi circle all of different ethnicities and disabilities. The one in the middle is holding a tablet while the others look at it too

If you get Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) benefits, you must tell the Social Security Administration (SSA) about certain life changes. These changes could affect your benefits.

Life changes happen, and it’s important to tell SSA about them to keep your benefits and avoid problems. If you don’t report certain changes, SSA might send you the wrong amount of money.

If you don’t report important life changes to SSA, it could lead to problems with your benefits, such as:

  • You might get paid too much and have to pay it back to SSA.
  • You might not get enough benefits and miss out on money you are owed.
  • SSA might stop paying your benefits or even give you a fine for not reporting important changes or if you intentionally withhold information.

Below are some life changes you need to report to SSA while receiving benefits.

Changes You Must Report for Both SSI & SSDI

Tell SSA right away if any of the following things happen:

  • You start working, including part-time or self-employment.
  • Your health improves and you are no longer disabled.
  • Your living situation changes, such as:
    • You get married or divorced.
    • You have a child or adopt a child.
    • Someone moves in or out of your home.
    • You move to a new address.
  • You take a trip out of the U.S. for 30 days or more.
  • Your citizenship or immigration status changes.

Additional Changes You Must Report for SSI

If you receive SSI benefits, you must report everything listed above, in addition to the following information about income and resources. 

How to Prepare for SSI and SSDI Reviews- Image of a lap top resting on the bars of a scooter. A disabled person's hand are on the keyboard but you can not see any further identification
  • Income changes (yours and your spouse’s):
    • If you or your spouse get a job, lose a job, or get other income (like alimony, child support, or a pension).
    • If a child receiving SSI has parents who start earning more money.
  • Savings or assets over the limit:
    • If you are single and have more than $2,000 in savings or other assets.
    • If you are married and have more than $3,000 combined with your spouse.
    • If a child receiving SSI has parents who exceed the resource limit.

How to Report Changes to SSA

Image of a black woman with a blue top holds her cell phone

It’s best to report changes to SSA as soon as they happen to avoid overpayments or penalties. You can report changes in different ways:

Call SSA at 1-800-772-1213 or TTY 1-800-325-0778.
Send a fax or mail to your local SSA office (Find your
local office).
Some changes can be made using your online account (Create an account)

How Often SSA Checks Your Benefits

If you get SSI or SSDI benefits, SSA will check your benefits from time to time to make sure you still qualify. There are three main types of checks you should know about.

Continuing Disability Reviews for Adults and Children – SSI and SSDI 

Every few years, SSA will review your medical condition to see if you are still disabled. These reviews happen at different times for everyone. SSA decides when they think your condition will improve and then sets a time for the review.

When contacting you, SSA will ask for your doctors’ names, medical visits, and medications from the last 12 months. 

Keep a simple list of:

  • Your doctors and clinics.
  • Your appointment dates.
  • Your medications and tests.

Non-Medical Redeterminations – SSI 

Every few years, SSA will conduct a redetermination to decide if you continue to meet the non-medical eligibility criteria for SSI benefits. SSA will check your income, savings, and living situation.

Keep copies of:

  • Pay stubs.
  • Tax returns.
  • Bank statements.
  • Life insurance policies.
  • Bills (rent, utilities, etc.).
  • Proof of other income (pensions, child support, unemployment, etc.).

Age-18 Redeterminations – SSI 

If a child gets SSI, SSA checks their case when they turn 18 to see if they still qualify as an adult. SSA will ask for information about their medical care, school, and work (if any). Keep a list of doctors, medications, and treatments to make the process easier.

How to Save Money Without Losing SSI Benefits

If you get SSDI, you can save as much money as you want without losing your benefits.

If you get SSI, you must make sure that the value of all your countable resources does not go over a strict limit: $2,000 for an individual and $3,000 for a couple. 

An Achieving a Better Life Experience (ABLE) account is a way to save more money while keeping your SSI benefits. An ABLE account lets you save up to $100,000 without it counting toward the SSI resource limit. Anyone can put money into your account, up to a combined annual limit ($19,000 in 2025). 

You can use the money for “qualified disability expenses,” including: 

  • Education.
  • Food.
  • Housing.
  • Medical bills.
  • Transportation.
  • Job training.

Currently, to be eligible to open an ABLE account, you must have a disability that started before you turned 26 years old. Starting in 2026, people with disabilities that began before age 46 will qualify for an ABLE account. 

Acronym Glossary

SSA: Social Security Administration

SSI: Supplemental Security Income

SSD: Social Security Disability Insurance

ABLE: Achieving a Better Life Experience

Resources

Logo for the National Center for Disability, Equity, and Intersectionality, which includes 3 half circles in a circular form all overlapping each other. Text next to it reads: The National Center for Disability, Equity, and Intersectionality

Policy Unpacked: The U.S. Court System

**Terms in bold will be defined in a list of key terms at the bottom of this article. Please refer to the glossary as needed!**

This is the third article in the Policy Unpacked Series which takes a closer look at the U.S. Court System. The first two can be found here: The Constitution, Executive Orders, Memo’s and Proclamations and here: Administrative Agencies and the Rulemaking Process.

The Separation of Powers and the U.S. Constitution- Refresher!

The Constitution set up three branches of the U.S. government: the executive branch, the legislative branch, and the judicial branch. The second article in this series talked about how the president of the United States is the boss of the executive branch. The executive branch is in charge of making sure laws are followed. The U.S. legislative branch, also known as Congress, makes the laws. Congress is made up of the U.S. House of Representatives and the U.S. Senate.

The judicial branch is supposed to tell everyone how laws should be applied and to make sure the laws are fair. The Constitution sets up the U.S. Supreme Court as the highest court in the U.S.. The Constitution gives Congress the power to set up the lower courts. 

What are the Lower Courts?

There are many types of courts throughout the country. Thus, each state has a state court system and at least one federal (or U.S.) court. 

State courts: Each state has its own court system set up with three different levels of courts called: a trial court, an appellate court, and a state supreme court– just like the federal court system (eight states do not have a second-level court, and only have a first level court, called a trial court and the highest level court, called the state supreme court).

  1. The lowest court in each state is called the trial court. Trial courts have different names depending on the state you live in. 
  • For example, in Maryland, there are two types of trial courts: District Courts and Circuit Courts– and they are set up to hear different types of cases, but they are still both the first level, or lowest level of courts in the state. 
  • In California, trial courts are called Superior Courts. 
  • In Pennsylvania, trial courts are called Courts of Common Pleas. 

Trial courts around the U.S. mostly handle criminal and civil cases; traffic violations; family matters, and wills and estates; however, sometimes even estate courts have their own courts in some states (called Orphans’ Courts). 

  1. The appellate court or state courts of appeal acts as a higher level of review from the lower court. They do not start over or listen to anything new. They are looking at whether the lower court looked at the law the right way. If someone thinks the lower court made a mistake, they can appeal their case, or ask the appellate court to look at their case again. But the court will not always agree to take the case. Appellate courts also have varying names depending on the state you are in, but their names usually contain the state you live in and the word “appeal” or “appellate” somewhere in them.
  2. The state supreme court is the state’s highest level of review. They have the name of the state followed by “Supreme Court.” After the second level of appellate court, the case goes to the state’s supreme court. This court does the same thing as the state court of appeals, but because it is the highest level of the court in the state, what this court decides is the final decision. The only possible place you can go from here is the U.S. Supreme Court and the chances your case will get there are low. 

You can only get to the U.S. Supreme Court if: 

  1. Your case involves a question about U.S. law (called federal question) and 
  2. The Supreme Court decides to take it! (Because they do not take all cases and they choose what cases they want to hear.)

The Federal Court System: U.S. Courts

  1. Federal Trial Courts: Each state has at least one federal trial court. They all start with the name, “United States District Court for the . . .” States with more people have more courts. These courts handle all types of cases where people are accused of breaking federal laws.
  2. U.S. Circuit Courts: These are the U.S. appeals courts (just like the state appeals courts). After a U.S. trial ends, if someone believes the law was not applied correctly, they can appeal to an appeals court. These courts do not hear new evidence but review whether everything was done correctly and the law was properly applied.
  • There are thirteen appeals courts throughout the country. 
  • The first eleven circuits are divided based on where they are in the country. 
  • There are two additional courts (that gets you to 13): The Court of Appeals for the Federal Circuit and the Court of Appeals for the District of Columbia. You may have heard the “U.S. Court of Appeals for the 11th Circuit” in the news . . . and now you know why! 

*Because there are special courts that we aren’t mentioning here, the Court of Appeals for the Federal Circuit usually handles those types of cases– like patents, commerce, and international trade.

  1. The U.S. Supreme Court: This is the highest court in the U.S. The Supreme Court only agrees to take on a small number of cases each year (they are asked to hear 10,000 cases per year and only hear about 65-70). 

Cases get there in several ways: 

  1. A case can get here from a U.S. Circuit Court, 
  2. If two states have a disagreement about something,
  3. If a federal law is the question in a case that went all of the way through the state supreme court (for example, the Individuals with Disabilities Education Act), or most commonly, 
  4. If someone says that the government has broken the law/violated the constitution. 

The Supreme Court has two ways of handling cases. One is the “merits docket,” where the court reviews cases over months or even years. The other is the “shadow docket,” used for urgent decisions. Since the Supreme Court can’t handle every case, lower federal courts decide most cases involving federal laws.

In the next part we will discuss Lawsuits and Court Proceedings. 

Definitions: 

  • Appeal: When you ask a higher court to look at the decision made by a lower court. 
  • Appellate Court: The second level of courts in the state or the U.S. An appellate judge looks over the case that the first court (the trial court) heard and decides whether to take the case. They decide whether the law was applied in a fair way.
  • Circuit court: A type of court that handles cases within a specific geographic area, known as a circuit, that can hear a wide range of cases. They have other names before and after them so you know what type of circuit court it is.
  • Congress: The part of the U.S. government that makes laws. It has two parts: the Senate and the House of Representatives. The people in each state vote for who serves in Congress to represent them. Congress has the power to declare war, approve budgets, propose bills (that become laws), and check the actions of the present and other branches of government
  • Executive branch: The part of the government that makes sure laws are followed and runs the day-to-day work of the country. In the United States, the leader of this branch is the president. The president, along with help from the vice president and the Cabinet, work to keep the country safe, manage the military, and handle relationships with other countries. 
  • Federal Circuit Court of Appeals: A special court that handles appeals on specific types of cases from all over the United States. The Federal Circuit deals with cases involving certain claims against the federal government. There are thirteen of them. The first eleven are numbered and divided based on where they are in the country. There is also the D.C. Court of Appeals and the Court of Federal Appeals for the Federal Circuit that handles cases that deal with special types of law like international law, patents, and government contracts.
  • Federal court: A court that deals with issues related to federal (U.S.) laws, the U.S. Constitution, and disputes between states or between the U.S. and other countries.
  • Federal judges: Judges serve in federal (U.S.) courts for life, so they are not supposed to be influenced by the public or presidents.
  • Federal trial court: The court where a federal case starts. These courts handle a wide range of cases involving issues of federal law. 
  • Judicial branch: The part of the U.S. government that interprets and applies the laws. It is made up of courts, with the U.S. Supreme Court as the highest one. Judges and justices in these courts decide if people are following the laws, if the laws are fair, and if the laws follow the Constitution.  
  • Legislative branch: The part of the government that makes the laws. In the United States, this branch is called Congress, which is made up of two parts: the Senate and the House of Representatives. Congress discusses ideas, votes on these ideas, and if most people agree, the ideas become laws that everyone has to follow. 
  • Merits docket: Where the Supreme Court handles regular cases that take a long time to review and decide, often months or even years. It’s for the more detailed and complex cases that need thorough examination.
  • Orphans’ court: A specialized state court where if someone passes away and leaves behind property or money, this court helps manage and distribute those assets according to the person’s will or state law. 
  • Shadow docket: Emergency actions taken by the U.S. Supreme Court that do not go through the full briefing and hearing process of a formal opinion. 
  • State supreme court: The highest court in a state’s judicial system. It has the final say on legal matters within that state. 
  • Trial Court: There are both state and federal trial courts. Cases start here and are “tried” here. This means that all of the evidence is laid out and the judges hear both sides. Juries can be there depending on the case, and this is the first level of the courts for both the state and federal level.
  • U.S. Circuit Courts: Courts that review cases that have been decided in lower courts to ensure the law was applied correctly. 
  • U.S. Supreme Court: The highest court in the United States– created by the Constitution as the judicial branch. It is made up of a group of nine justices that serve for life.