Thursday, June 25, 2009

Lauren's story: "Are they going to be shunned to the basement?"

Lauren Mullis had prepared for this week to arrive. As executive director of The Arc of Mecklenburg County - a United Way agency - she had begun cutting costs long ago to prepare for the cuts that would come her way. She snipped at the budget, moved her staff into a smaller office, changed from a color printer to black and white.

And then, Tuesday.

The Arc, which helps families dealing with developmental disabilities navigate the phalanx of social services and government red tape, lost $111,792 - 44 percent of its United Way money. The agency gets 75 percent of its budget annually from United Way support. "It's devastating," Mullis says.

Yesterday, she sat down to tell her agency's story - which is also her story - and how Mecklenburg families with disabilities are threatened by more than Tuesday's United Way announcement.

Says Lauren:

The Arc has been around for 56 years this year, and it means an awful lot to me and my family. Forty-seven years ago, my aunt was born with autism and mental retardation, and back then the doctor's answer was to put them into an institution and forget about them. My grandparents did nothing of the sort. They brought her home to raise her just like they did the rest of their children. They looked for local resources in the community, and they found the Arc, 47 years ago, here in Charlotte.

They immediately got involved, so much so that my grandfather, Don Austin, became the board president of this chapter in the 1970s and board president of Arc of North Carolina in the early 80s. I did my internship here and fell in love and thought, how can I make a career out of this. I have an instant connection with people who are different. It's probably because I grew up around my Aunt Becky; it's no big deal to me.

We serve over 3,000 clients a year. We serve people from birth to death. Developmental disabilities don't just go away - there's no cure. So often times we're the ones who continuously get larger and larger client loads because we're not losing clients. We're gaining clients because of how many people are moving here. We'll tell them what to expect, and they depend on that.

This United Way situation has been like a train off in the distance I've been hearing for a very long time. It's been somewhat aggravating that this has been plaguing us for as long as it has. As the leader of an organization that's always been dependent on United Way dollars, but feels that we're doing everything right, we've had the rug pulled out from under us. It's devastating.

We prove every year that what we do every year is valuable and needed. We steer our clients to the right people to talk to, go with them to hearings, sit by them and help them fill out appeal paperwork. Take them though all of the appropriate channels so if they're being denied a service, they can appropriately appeal that denial. You need someone like that in the community who are going to try and stand up for people who are the most vulnerable.

Look at what's going on with the state budget with Health & Human services. It's a shambles, and so many of clients rely on that money. Many of our clients are recipients of something called CAP - Community Alternative Programs - and it's a Medicaid waiver designed to keep people out of institutions. A lot of that funding is being completely cut. There are at least 400 people waiting in Mecklenburg County for CAP slots, and these people will be getting no CAP services anytime soon. Other services like day support people, who go with developmentally disabled out to a job program or to do crafts, or vocational rehab, are also being cut. So what's going to happen? These people are just going to sit at home, and Mom and Dad aren't going to get any respite because those dollars are drying up.

There are even problems with funding of group homes that serve people with mental health issues and developmental disabilities. If the group homes go away, where are these folks going to go? The last thing I want to see is someone who is at their wits end because they have no support, they have no services, and we can't provide them anything because everyone that we would suggest that they go to doesn't have any dollars. Are they going to be shunned away in the basement again like so many years ago?

The budget proposals for Health and Human Services take us back to the 1960s in terms of what's available. That is the real scary thing. While I can understand the United Way wanted to put money toward homelessness and food banks and crisis assistance - and that is very needed - there are a lot of underlying factors going on with many agencies that they may not recognize as critical needs as well.

Our folks, who have developmental disabilities, who are not going to get better, who did nothing to deserve their plight in life, are getting the short end of the stick. The state cuts are going to come down, and it's going to create panic. It's going to create chaos, and these families are going to turn to the only places they know to turn to, which are the advocacy organizations like the Arc.

I've been working on a budget and everything, from the events we're able to do like our educational workshops, to programs such as our fetal alcohol awareness program, to our K-Kids Club, which is a club for children with and without disabilities to teach them the value of one another - all of that is threatened. We used to have a little money to help clients - if we have an adult with a disability living on their own who needs help with a power bill, and help to teach them at the same time how not to do this again. But we have no money to do that anymore.

If you're not personally touched by it, then you don't get it. I am concerned that there are people at the United Way - while we have been a United Way agency for over 30 years - still don't get it, because they're not personally touched. That's a barrier that's tough to get over. One way we're getting past it is by telling our stories. We all have a reason why we're here, why we're touched by this organization, and when you tell stories you can see people with a look on their face. It's "Ohhh, I never thought of it." But then they understand.

10 comments:

Anonymous said...

My sister is taken care of by the Arc of Charlottesville,VA and one of the big contributors is Dave Matthews, who has done so much. I challenge our ultra wealthy people in town to fill these gaps.

Anonymous said...

I have contacted ARC twice offering to be a fundraiser. They have never returned my calls. I am now volunteering for a similar agency. I think ARC needs to be a little more aggressive because the money is out there. I know it's a great organization but they need to promote themselves more rather than relying on the United Way.

Mama Glenda said...

I have 25 year old twins -- one is autistic -- one is developmentally delayed. I don't know where my autistic son would be without the ARC. I constantly remind him how fortunate and blessed we are to live in a city where we have excellent supports from agencies like the ARC, Easter Seals, RSS (Residential Services) and TEACCH (Treatment and Education of Autistic and related Communication handicapped CHildren). Many times I've been at wits end and the kind professional sensitive people at these agencies have pulled me back from the brink of what felt like hopelessness into a position of empowerment. We can't afford to allow our supportive agencies to fail. As much as I appreciate progress, people are more important than light rail and streetcar feasibility studies. Also, our media needs to be more responsible, sensitive and sensible when reporting on issues that affect so many -- sometimes stirring up a wasp's nest doesn't get rid of the wasp -- it just gets everybody stung.

Anonymous said...

It's obvious now that people are not donating to the United Way, but the money is out there. I will give directly to the ARC from now on. My son is disabled, he is 20 now, and as a community we can in no way afford to cut the helpless of their services! The ARC must be aggressive. I wish more people were exposed to the everyday challenges disabled people face just to live in the community.

Angie said...

Where can we donate directly to Arc? I lost faith in the United Way a long time ago.

pstonge said...

Angie,

You can get more information on donating to the Arc by calling the agency at 704-332-4535 or visiting online at www.arcmeck.org.

Jeremiah said...

There's no entity in this community with more responsibility for the situation organizations like ARC and Metrolina Association for the Blind find themselves in today than the Charlotte Observer. Stories like this one, and statistics talking about the more than three-quarters of every dollar donated to United Way that went to support member organizations even after the frivolity of the United Way board and former director, should've been splashed across the front page last fall. The media absolutely has responsibility to report horific events like the waste at United Way. However, that responsibility is accompanied by an obligation to tell all sides of the story. The Observer opted, last fall, to engage in sensationalism of the grandest kind, rather than to put names and faces to the horror which would come of dramatic reductions in donor dollars. That same leaning toward sensationalism is again at work with publication of stories like this one, long after its true influence could've been felt. The Observer is as much a criminal against the needy of this area as any participant in United Way's former management or directors.

Anonymous said...

This story tells very little about what the Arc does. So they want money??? What exactly do they do???

Barbara said...

The ARC has been a tremendous help for my daughter, without it we would not have the personal assistant services, the respite care or the supplies that she needs. She needs more than what is available and now they are cutting more and more?? She was born mentally and physically handicapped and her father and I have taken care of her at home for the past 20 years and we are just now getting assistance with her. If they keep cutting what little is available, I will have to remain unemployed to take care of her myself. If they cut the services that ARC provides, I don't know where else to turn to get help as they have been the only ones willing to help us.

Sabrina McCracken said...

The Arc of Mecklenburg is an advocacy agency that advocates on behalf of people with developmental disabilities and their families.

Services of the Arc of Mecklenburg County include case and class advocacy, support and outreach, information and referral, education and training, public awareness of disability and special projects.

For more information regarding us please visit us online at www.arcmeck.org or give us a call at 704-332-4535 ext. 103 and I would love to speak with you more about what we do!