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.
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.
Why is Medicaid Important?
IS MEDICAID IMPORTANT? IF SO, WHY?
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.
Welcome to Nancy’s Blog
Here, Nancy Ward – The Arc’s Training Specialist – will keep you updated about what’s happening with The Medicaid Reference Desk. Watch for regular updates on Medicaid, person-centered planning materials, self-advocacy and more.
Thanks for reading!