On the Independence Amplified Maryland broadcast on Monday, February 22, the Public Policy Platform of the Maryland Independent Living Network was shared and discussed.
This special session focused on grassroots legislative advocacy in Maryland. Now more than ever our voices need to be heard. The Independent Living Partners Legislative Policy Platform is a joint effort of the Maryland Centers for Independent Living and the Maryland Statewide Independent Living Council. We explained how to find information about proposed legislation that may impact the disability community, and how to participate in this year’s all-virtual legislative session.
Here are the documents that were shared in the discussion.
Marvin made three attempts to leave the nursing facility before he was able to move to his own home in the community. There were many difficulties and complications along the way.
At first, the court told Marvin his income was too high to qualify for services in the community through the waiver program. The second time he tried to leave the nursing facility, he was on a waiting list for three years, but never received services. The third time was a charm, Marvin said, and he finally received a voucher that allowed him to move into his own home in the community. His persistence paid off at last, and he was on his way to moving into his own apartment.
Once he was in his own apartment in the community, he encountered problems with accessibility. Marvin had to advocate for himself with property management to get these problems fixed.
One day, after Marvin left his apartment, he realized he left something there that he needed, but his aide had already left for the day. Marvin returned to his apartment to retrieve his belongings, but then he realized something – he had no way to get out of his apartment on his own, because there was no electric door opener. He was stuck. Marvin wrote a letter to the property manager about the problem, and 3 months later his electric door opener was installed, as well as an accessible showering system in his bathroom. Again, Marvin’s self-advocacy paid off.
During an interview, Marvin had some advice to offer others who are interested in moving out of a nursing facility and into the community:
“You have to really want it – to go after it and get it – otherwise you are going to be frustrated because everybody has things that come up and problems they are going to run into. You have to really want it.”
Marvin encourages people to make careful decisions about where they will move to:
“I tell people to insist to see the place before you move into it. There are certain things you need to make sure you can do with a disability or using a wheelchair; you need to be able to open the refrigerator door all the way, and you might not be able to even though the apartment says it’s accessible. A lot of the places just put a grab bar in the tub and call it accessible even though it isn’t. I know people who have lived for years without taking an actual shower – they just washed off instead because the bath wasn’t accessible to them.”
Marvin is appreciative of all the people who helped him before and after his transition to the community:
“I met a lot of helpful people out there. I couldn’t have done it on my own. Some of these people were support counselors or supports planners – they can help you the most because they know all the problems everyone else has had.”
Marvin also worked with The IMAGE Center during his transition into the community. Crystal Brockington was Marvin’s Peer Support Specialist and, after he moved out of the nursing facility, Crystal was also his Peer Mentor, with additional assistance from Lori Baskette. With encouragement from The IMAGE Center, Marvin participated in committees with the Long-Term Care Ombudsman and eventually the National Consumer Voice. Marvin currently works part-time at The IMAGE Center as a Peer Outreach Specialist and Peer Mentor, visiting residents of nursing facilities and coaching them on their options for receiving services in the community. Marvin also volunteers for Public Service Consultants to do additional peer outreach work.
“It’s rewarding – people cry [tears of joy] at the prospect of being able to leave [the nursing facility],” Marvin said. “Being out gives you a sense of self-worth that you lose in the nursing facility. The longer you’re there, the more everything just drops down – your morale, and everything you look forward to. There are so many things I can’t do, so I don’t ever think about those things – I just think about the things I can do and I try to do those things.”
Marvin has worked with residents in about 12 nursing facilities in Baltimore City, and he has helped over 100 people apply for waiver programs to receive services in the community. He is passionate about helping others to realize their potential for greater independence.