The Medicaid Reference Desk at SABE 2012

Self Advocates Becoming Empowered (SABE) is a national self- advocacy organization. This year SABE’s tenth conference was held in St. Paul, Minnesota, and The Medicaid Reference Desk sponsored an exhibit to provide important information about Medicaid to self-advocates.  The conference theme this year was “It’s About Fairness,” which is very important to self-advocates, who want to be treated as equals with the same rights and responsibilities as everyone else. Having control over the decisions that impact your life means having the information you need, especially about your health care services.

A lot of the conference was about self-advocates making their voices heard through avenues like voting. It also had sessions on different topics like jobs, relationships, and advocacy. There was also had a human rights fair that was about being treated with respect and dignity, as well as a dance and a play. Everyone had a great time, and people saw old friends and made new ones. Hundreds of people stopped by The Medicaid Reference Desk booth to ask questions about Medicaid, pick up information about programs and services, and enjoy some of our branded giveaways. Interest was so great that we gave away everything we had by the end of the conference!

Why was the SABE conference so exciting? Because it is a national organization whose members are all self-advocates and it is run by self-advocates. Their enthusiasm for the sessions and the topics make the conference really outstanding. At the conference, everyone is supporting each other to be included in the decision making process about their life; the Medicaid Reference Desk was proud to be on hand to provide information that helps self-advocates take control of their health care services and decisions.

Texas Advocates Conference

This time I’m going to write my blog about my presentation that I made on Medicaid at the Texas Advocates Conference. The conference took place in Grapevine, Texas from July 27th-29th. It was a small group but this made it nice because we were able to have a good discussion.

One of the questions asked was “how does someone apply for Medicaid services and at what age is someone eligible for Medicaid?” In many states if a person is eligible for Supplemental Security Income (SSI) benefits, they automatically qualify for Medicaid. In other states, different criteria are used than those for SSI eligibility. Many states have online applications to apply for Medicaid. Please click on the “Medicaid Info by State” tab to find information about Medicaid in your own state, including a link to the state’s Medicaid website.

To apply for Medicaid, you must be a U.S. citizen (or long-term legal resident in some states) and a resident of the state where you apply for Medicaid. To apply, you will need information about your income, the amount of money you have in your bank accounts or other assets, your Social Security number, and information about your disability. Since each state has different requirements, check your state’s Medicaid website for details.

The age at which someone may apply for Medicaid depends on which program you apply for and which state you live in. Children with a disability may be eligible for Medicaid if their family income is under a certain amount, which varies by state. In some states and under some programs, children with a disability may be eligible for Medicaid even if their family’s income is above the low-income amount. Check your state’s Medicaid website to get more information.

Another discussion point at the conference was about how much money and other assets someone may have and still be eligible for Medicaid. For a single person with a disability, the maximum amount of money or assets is $2,000 and for a person with a dependent, it is $3,000. For families of children with disabilities, some states have programs that provide Medicaid with a higher maximum asset limit.

Some people may be interested in a program called Plan for Achieving Self-Support (PASS) which allows you to put some of your assets above the $2,000 limit towards training for a job or going to school. To be part of the PASS program, you need to develop a plan showing how you will learn a new skill or get an education to get a job. The goal of a PASS program is to earn enough money so that someone does not need income from the government. More information about this program is available here:

It is very important to me to talk about and share ideas so we can all learn how to lead the life we want and support others to live the life they choose. I was glad to be able to answer some of these questions about Medicaid, and am grateful to Texas Advocates for having me speak at their conference!

The History of Medicaid and How it Can Affect Your Life

This blog is going to be a little different as I am going to write about the history of Medicaid. Why, you ask, is this important? Well I am going to let you, as the reader, decide if it is or not. What I hope is that this information will encourage you to look up your own state’s Medicaid system information available from the “Medicaid Info by State” menu tab above.

As early as 1945, President Truman proposed a national health care program to Congress. He was concerned about the lack of health care for all Americans, but particularly for children. It took 20 years for the United States Congress to vote on a national health care program and pass it into law. President Johnson signed the law in July, 1965, to create the Medicaid and Medicare programs. Medicaid was designed to provide health services to people who cannot afford them on their own. Medicaid services and programs are managed by each state. The services provided and eligibility requirements may vary from state to state although minimum levels are set by the federal government. Use the “Medicaid Info by State” or the “What is Medicaid?” menu tabs above to get more information.

Of course, the Medicaid program has changed over the years. For example, in 1981 the waiver program was added to allow people to have some choice in selecting their health care provider and their home- or community-based care program. The waiver program is not just to pay for traditional physical care but also to help people learn how to do tasks. For example, a provider of Medicaid waiver services might teach people how to clean their home so that they can live on their own in the community. It also allows people to have more say in which services are the most important to them, because they have the greatest impact on their lives.

Although President Johnson signed the law to create Medicaid (and Medicare) in 1965, it took until 1982 for all 50 of the states to participate. The last state to join the Medicaid program was Arizona.

Another of the services that has been added to Medicaid is dental care. Getting access to dental care has been a big problem for people with intellectual and developmental disabilities—one study found that more than one-fifth of people with I/DD did not brush their teeth daily. Medicaid can help solve this problem. Not all states participate in the dental care portion of Medicaid so check above (in the “Medicaid Info by State” tab) to see if your state provides it.

A change in the Medicaid program will be coming in 2014 with the Affordable Health Care Act of 2010, which will expand the number of people who will be eligible for Medicaid services. It will provide Medicaid for more low-income families, even if they do not have children.

I encourage you to find out more about your own state’s Medicaid program so that you know if you are eligible for Medicaid, if you might become eligible, and so you know of all of the appropriate services you can get. If you would like more information about the history of Medicaid, please see:

Families’ Perspectives on Cuts to Medicaid

What can you do when your services are cut? How can you help educate yourself and others?

I am very excited about writing this issue of my blog because I think it is on a very important and timely issue. Over the next few months I will present different perspectives of self-advocates, families and providers regarding how they feel about having their Medicaid budgets cut.

In this month’s blog, families of people with I/DD from Oklahoma and Washington, D.C., were interviewed. They did not wish to be identified by their full names.

Medicaid services in many states have been cut in the past few years, and the following questions and responses are based on actual or potential Medicaid service reductions.

The first question I asked families of self-advocates was: Have the Medicaid services of your family member been cut?

S.S. from Washington, D.C. said: “Not yet.  We are trying to reduce costs by substituting overnight monitoring for awake overnight staff, but we are having trouble convincing the Medicaid office [that this is a good solution].”

L.D. from Oklahoma said, “No. However, my son has been on the waiting list to get services so that he can live independently from us. When I become my son’s staff, our relationship changes as he wants his Dad to be his Dad and it is confusing to him when I’m both his Dad and his staff. My son does not fight with his staff when it’s not me because the role of his staff is clear to him.”

A follow-up question was, “What alternatives does a family have if their self-advocate’s Medicaid services are cut?”

S.S. said, “[Right now], my son lives outside of our home. He is with us for one day a week to save money (and for fun). I guess we could try to do two days a week, but it would be hard on us physically.”

L.D. agreed that families have to take on more responsibility for care if services were cut, and that this can be stressful.

“If my son’s Medicaid services are cut, either my spouse or I would have to quit our job to assist him. It would be a difficult family situation if that were to occur,” he said.

I also discussed with the families interviewed how they felt they could communicate to legislators and other government officials what the needs of people with disabilities are regarding Medicaid services.

S.S. was skeptical about how well the current system works. “It seems like squeaky wheels and drama queens still get more money and few people are thinking about how we could all do with less so everybody could have basic supports,” she said.

L.D. suggested that his family could go to the capital and talk to the legislature about the needs of people with disabilities.

The final question I asked was how cuts to Medicaid services would affect the lives of self-advocates and their families.

S.S. said, “What I worry about most is that one: nobody would recognize how hard we and the agency have already worked to minimize costs (and we continue to do so); and two: the state would make arbitrary, not person-centered, cost cuts. I think my son’s health and freedom would both be at risk with careless cuts. What about system costs? Why are more states not trying to save money with better data systems like Therap?”

L.D. agreed that cuts could take away important options that are very important to self-advocates. He said, “My son might have to go live in a group home, which is not his choice of how he or we want him to live.”

Providers’ Perspectives on Cuts to Medicaid

I am very excited about writing this issue of my blog because I think it is on a very important and timely issue. Over the next few months I will present different perspectives of self-advocates, families and providers regarding how they feel about Medicaid budget cuts.

In this month’s blog, providers from Arizona, Ohio, and Colorado were interviewed. They did not wish to be identified by their full names.

The Answers

Medicaid services in many states have been cut in the past few years. First, I asked providers if they had experienced any cuts to their state Medicaid budgets.

S.W. from Arizona said, “The rate providers are paid for our home and community based waiver has been cut. The people we serve have talked to me about how concerned they are about losing their staff and services. We are also worried about keeping the same quality of staff we have had in the past.”

J.R. from Ohio said their Medicaid funding had been reduced. Ohio has 88 counties and each of those counties has to raise their own state match for their Medicaid funding. Ohio is a diverse state with urban and rural counties and this can make it hard for the rural counties to make the state match. He said, “the state of our economy has forced us to have people live together whether they want to or not.”

M.E. from Colorado said, “Our services were cut by 4.5% last year. We also have had a delay in the growth of services in the past 2 years.”

In addition to affecting the amount of services they can provide, cuts to Medicaid can also change the way states deliver and pay for services.

S.W. said: “All organizations and agencies have to be more effective and productive with the resources we have. Staff have to be more creative also when they are working with the people we provide services to so that all the people we serve feel safe and still feel like they can do all the things they have in the past.”

M.E. says that Colorado has proposed capping their behavioral services program. Their day programs were recently capped at 200 days for a 50 week year due to shortfall in their budget. In 2009 Colorado went to a fee for services model, and he says that after 3 years everyone agrees it was a mistake. But he says that there is a light at the end of the tunnel: “We will have 173 people taken off our waiting list in the 2014 budget.”

Providers are also trying to work with self-advocates to educate legislators and the rest of the community about how cuts affect service delivery.

S.W. said, “We are educating ourselves, the individuals we serve, and other providers and community organizations or agencies to work together so we can educate our legislators.  Everyone wants to be treated with respect and dignity.”

J.R. said, “Families have developed partnerships in all of our communities so we can educate and support each other.”

M.E. says, “The providers all work together to stay in contact. We have a state newsletter to share information with all interested parties. We have a strong partnership between people with developmental disabilities and the organizations or agencies that support them. I think we have a great partnership that is invested in working very hard to make it the best it can be for all citizens of Colorado.”

What can you do when your services are cut? How can you help educate yourself and others?

I am very excited about writing this issue of my blog because I think it is on a very important and timely issue. Over the next few months I will present different perspectives of self-advocates, families and providers regarding how they feel about having their Medicaid budgets cut.

In this month’s blog, people from Kansas, New York, Oklahoma, and Rhode Island were interviewed. They did not wish to be identified by their full names.

Medicaid services in many states have been cut in the past few years. I interviewed self-advocates, families and providers about whether their services have been cut and if so, how they were affected by the cuts.

How Services Have Been Cut?

DS from Rhode Island says: “Budget cuts have caused a lot of my friends to have the hours service providers give to them cut because their provider agency has had their budget cut.”

Others are facing other changes in Medicaid service delivery. BL from Kansas says: “Our services have not been cut, but people are talking about managed care replacing the way people receive their services.”

How Changes Might Affect People

Self-advocates, their families, and the people who support them are trying to figure out all the information they can about changes to Medicaid to find out what services they are eligible for, how changes might affect them, and what they can do to prepare.

BL says: “People are educating themselves and others so when the Medicaid cuts are figured out, everyone will be better prepared and have an understanding of how the changes will affect them.”

DS agrees: “We think education is a powerful tool, so we would educate people so they do not have to say they do not understand” if their services change.

DB from Oklahoma says she would do research on the service systems and organizations that support people with disabilities. That way, “my friends and I would know how to access the service system so we would be armed with our knowledge and we could educate others.”

But some people say they have talked with their friends and supporters and still don’t have the information they need.

Many Need More Information

Self-advocates are also letting their legislators know what the cuts will mean to their daily lives.

BL says: “People are trying to educate their legislators about how this would affect people who get services and people who support them. Self-Advocates feel that they would lose control of their services that they worked so hard to get.”

He adds: “We are trying to figure out how our legislators are going to vote so we can put in place our new legislation. We are concerned about the effect budget cuts might have on the consumer-directed Medicaid services initiatives based on the recent Kansas law (KSA 39-7,100). We are educating everyone so we don’t lose control of our services.”

SA from New York reminds us what cuts can mean for self-advocates and people with I/DD: “If my services were cut, I am lucky to have resources that would step in to make sure that I received the services that I needed. But everyone doesn’t have those same resources.”

But, she adds, “All of my medical services would be affected. Medicaid currently pays for all my therapies and medical equipment. If I was not able to get these things I would not be able to receive my wheelchair that helps me get to work. It also helps me get around at work so I can have a job.”

DS also says she knows people who would not be able to work, because they wouldn’t be able to pay to get there.

DB agrees that without Medicaid services, “I would not be able to be a part of my community or have the quality of life I have now.”

DS concludes: “I would like to see self-advocacy groups educate themselves, so they could educate their legislators about what it means to be A PART OF your community.”

Marriage Penalty at TASH

At this year’s TASH Conference there was a Self Advocacy Forum.  I raised the issue of the Marriage Penalty so we discussed this for a while and people talked about portability for services (having services go between states for individuals wanting to marry who live in different states and need services which would require them to go on a waiting list in the state they will live).  In talking about this issue we decided that we would do a campaign where we would select a day that each of the fifteen states would go to their Capitol to educate their legislatures about the Marriage Penalty and portability for services.

Medicaid, SSI and the Marriage Penalty

People with disabilities also have hopes and dreams of getting married just like everyone else. Because we often receive government support and assistance (like Medicaid) to help us contribute to our communities, if we choose marriage we are sometimes penalized by being forced to live on more of a limited income. Sometimes this income can only be $1011 per month. So what do you do if you have to choose between living together without marriage or losing a big part of your income and benefits?

Many people with disabilities receive SSI, or Supplemental Security Income. In most states SSI is linked to Medicaid access and sometimes also to housing benefits, and so it is very important. The monthly amount paid by the U.S. Government is 674 dollars for each person, but married couples only get 1011 dollars. States can pay different amounts of money to add to this amount, but this depends on where you live.

So, if people who get SSI decide to get married, they can lose more than 300 dollars a month for rent, food, and medicine. In order to be eligible for SSI, a single person cannot have more than 2000 dollars in assets—but a married couple cannot have more than 3000 for both people, which is 1000 dollars less.


One of my friends, a member of Oklahoma People First, believes that it is important to make the public aware so they can form their own opinion on these issues. Her opinion is that two individuals who receive SSI and DHS (which is Oklahoma’s service system for people with disabilities) benefits should not be penalized because of their decision to become legally married. When a couple reports their marriage to any legal agency, the cuts begin immediately. Individuals with disabilities simply can’t afford to lose any assistance in today’s economy.


People First of Montana, a statewide organization whose members are self-advocates, is trying to change the Social Security provisions that apply to SSI recipients who want to marry.

People First of Montana is asking representatives in Congress to consider its request and help change the Social Security provisions that make it difficult to enjoy one of the most fundamental rights of our humanity: the sharing of love openly through marriage. 


In 2007, New Mexico passed a resolution asking Congress to remove the marriage penalty. New Mexico’s resolution says that:

“Individuals with disabilities have the same need as people without disabilities to develop and maintain permanent loving relationships; and….

Many individuals with disabilities hold religious and moral beliefs that preclude them from living together as husband and wife without being married…

Now, therefore be it resolved by the senate of the State of New Mexico that the United States Congress be requested to remove the penalty associated with being a married individual with a disability receiving Supplemental Security Income benefits.”

Although this resolution passed in New Mexico’s state senate in 2007, federal laws affecting the marriage penalty have not changed.

Why is Medicaid Important?


I want to give people the opportunity to have a conversation about how they feel about Medicaid.  The following persons are friends and business associates who have given their time to share their thoughts and views about Medicaid.  You can look forward to additional postings in the future.


Lynette is a self-advocate and officer of her state self advocacy group. She loves her dogs and lives in a rural community. Her wheel chair provides her independence to go out to eat and spend time with her friends.

Lynette:  Medicaid is very important to me because it lets me buy the equipment I need and want. For example I got a new wheelchair– it is very cool. I can go anyplace I want to go. I wish Medicaid didn’t have so many rules and it wasn’t so complicated.

Do you think it is important to understand Medicaid?

Lynette: Yes, because people may not know what it is. You can’t ask for services if you don’t know what they are. They could get something very useful to them if they knew it was available.

Dauphene lives in a rural community in her home and is 94 years young. She needs assistance with bathing, daily living skills and transportation to doctors’ appointments. Medicaid provides this help for her.

Dauphene: Medicaid is very important to me because I live in a rural area and it provides help for me at my home as well as some much-needed socialization because I live alone.

Do you think it is important to understand Medicaid?

Dauphene: Yes because it took me a long time to understand what was available for me so I missed many years of help that was out there for me.

Dee lives in a small city in a house and enjoys crafts and cooking.

Do you think Medicaid is important?

Dee: Yes, because without Medicaid I would not be able to see doctors or have transportation to these appointments.

Do you think it is important to understand Medicaid?

Dee:  If you don’t understand Medicaid you will not know what is available to meet your needs.

Kelly lives in a city and enjoys spending time with her friends and being a member of People First. She likes to go to movies, shopping and out to eat. Kelly speaks out for herself and makes her own decisions to live independently in her own apartment.

Do you think Medicaid is important?

Kelly: Yes, it is important to me because it helps me get my prescriptions. I also receive support for staff and they provide transportation to get to medical appointments.

Do you think it is important to understand Medicaid?

Kelly: Yes, if I understand Medicaid it helps me to look up things that I might need.

Thomas lives in a rural area with his parents. Due to living in a rural area it is difficult for a young man to find friends to hang out with. Thomas loves all sports, especially football and basketball and loves talking about them to friends. His wheelchair gives him the freedom to go where he wants and not depend on someone to push him. He won a Self-Advocate of the Year award this year for speaking out for himself. Thomas goes to work every day and spoke up for himself to get his job. Thomas is very proud that he is contributing member of his community. Because they live in rural America, his parents have to take him to work and pick him up every day. 

Thomas: Medicaid is important to me because I can get the things that I need and want. Medicaid helps my Mom and Dad be able to prepare a budget, and also provides them a day off.

Do you think it is important to understand Medicaid?

Thomas: Yes, because I would not have known about the services available to me for a specialist to provide me equipment that may prevent additional surgeries.


Wanda is a tireless advocate not only for her own child but for all people with disabilities. She lives in a city and is employed by a university where she works on a campaign to get rid of the “R” word.

Wanda: Medicaid is important to me because it allows my daughter to live at home with her family and she enjoys the same quality of life that she did before she became an adult. Individuals with developmental disabilities are the only population that is at the mercy of the government to have all their needs met.

Do you think it is important to understand Medicaid?

Wanda: Yes it is, because currently it is the only program that provides long term support to people with disabilities.

Nancy lives in a rural community in her home but works in a city. She has worked tirelessly for many years in the disability field supporting people with disabilities to advocate for themselves.

Do you think Medicaid is important?

Nancy: Because Medicaid funds over 75% of services for people with intellectual and developmental disabilities, it is important.

Do you think it is important to understand Medicaid?

Nancy:  Medicaid is very complicated and very hard to understand. But people with disabilities need to understand the things about Medicaid that affect them directly. They need to know what services are available and what their rights are. Because it’s so complicated, it is good that services like the Medicaid Reference Desk are there to help them.


Hannah lives in a city and is the advisor for a self-advocacy group. She has supported the self advocacy movement for many years. She is also involved in supporting people with disabilities to gain information necessary to make an informed decision to exercise their right to vote.

Do you think Medicaid is important?

Hannah: Yes, because people can get the services they need to live their lives independently.

Do you think it is important to understand Medicaid?

Hannah:  Yes, if Medicaid was made easier to understand and more accessible to professionals then they would be able to navigate the system and gain more knowledge to provide information for people receiving services to allow them to make their own decisions and choices.

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