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.”

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.”

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.

OKLAHOMA

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.

MONTANA

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. 

NEW MEXICO

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.

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.

SELF-ADVOCATES:

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.

PARENTS:

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.

PROFESSIONALS:

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.

Thanks for reading!