NEC-West Teleconference - 4/25/02

Dan Fisher, NEC Lawrence, MA
Carol Patterson, NEC-West San Francisco
Sylvia Wright, Hayward
Nancy Thomas, Alameda Network of MH Clients
Artensia Barry, Berkeley MH Commissioner
Kathie Zatkin, Alamdea County Network of MH Clients
Bobbie Schell, MH Client Action Network, Santa Cruz
Bill Tenhoor, consultant business development
Mark Karmatz

“Funding Cuts and Management Issues in Self Help programs - What Consumer Run Programs Need to Know to Stay Alive”

Groups get the attention of the Dept. of MH, demand that changes be made and successfully obtain funding but often the consumers haven't had the experience of how to manage a program or administer the money. Then they lose their funding because it hasn't been managed well. They ended because they never got technical assistance in how to manage their organizations.

Comment: The COSP (Consumer Operated Self Help Program) study of self help center effectiveness created a large influx of money to eight self help programs to enhance our programs. So we hired additional staff and bought stuff to fix up our centers. It all comes to a halt in August and we don’t know if we’ll be able to replace the funding. There were some good things from the experience:

We learned to keep better attendance, to count how many homeless we serve. We can then take our annual budget and divide it by the number of visits to get our cost per visit. In our case it was $22.13/visit which looks really good compared to a unit of day treatment at $1119.64. It’s important to figure out many unique individuals you served. Self help groups aren't used to doing this but it makes a great impression on funders. We should brag about ourselves at the Board of Supervisors. Even so, I don't recommend getting federal funding unless you have a full time person to do all the paperwork.

MH Commission doesn't seem to do anything, we're not focused. We need someone from the outside to give us information. I've visited a self help program and it was a depressing place. Outreach and information are needed to help and advocate for clients.

California Network of MH Clients is doing a satisfaction survey of the Board and Care facilities in Southern Calif. There needs to be client participation.

Medi-Cal (Medicaid in California is called Medi-Cal) reports from the state will focus on anything that isn't functioning well. If you address some of those, the State will be cooperative because they have to report back.

Bill TenHoor, Management Consultant, worked in the health trades and has organized a client group. What does the leadership of the consumer-run organizations need to know in order to be better leaders? We're thinking of developing a short course in management and leadership. Tentatively the course has 8 topics in the outline, 5 of which are mentioned below:

1) Leadership for the organization. What do we mean when we talk about leadership? Team building. Knowing what it means to lead, understanding the expectations. Express the mission, vision, values of the organization. What are leaders doing when they are doing their best? Challenging the current way of doing business, bringing people together around a common vision, helping others taking action, setting an example, recognizing accomplishment.

2) Organizing and mobilizing the human assets of the organization. How do you hire people, motivate them, develop them? How do you let them go when they aren't working? People are happiest when they're getting real feedback. This gets at the backstabbing and undercutting that happens in all organizations when feedback isn't clean and clear. Its about behavior: it's not personal. It’s essential to be open and honest and have continuous communication. Don't wait until it’s beyond hope. Have frequent group meetings when an issue comes up, rather than waiting for a set business meeting. It takes someone (or several people) watching over the process as a whole and calling a meeting when it’s needed. This will address evaluation as well as motivation.

Problem with a lot of egos in meetings -leadership needs more experience to bring the people back to the topic.

Team Skills - Active Listening - spend time defining and identifying this. What are the skills you can develop.

Conflict management - how do you negotiate? There’s a book "Getting to Yes: Negotiating Agreement Without Giving In”. What are the principles you follow to reach agreement? Learn about Intraspace Bargaining or Principled Negotiation. Differentiate the people from the problem. Articulate interest rather than positions, generate options. (Bill does workshops on this) Find ways to get past obstacles and interpersonal log jams through negotiation and mediation.

How do you get people cooperating to accomplish the mission and vision of the organization?

3) Dealing with the physical assets: space, information, technology, leases

4) Managing the financial assets: budgeting, financial skills, how to be accountable for the funds and protect yourself against allegations of misuse of funds. Know Excel inside out. Professional looking budget requests, with justifications. Living within the guidelines can be difficult.

How to work out budget changes. Shifting budget categories to reflect changes in direction.

Asking for guidance from contract monitors (ie. when you're told to cut your budget by 20%.)

In consumer run organizations, we often work in a state of fear - we're alone and they're just waiting for us to make a mistake and embarrass the consumer project. So we're afraid to let on that we don't know what we're doing and don't ask for help.

An important skill is how and when to ask for help. To be able to say "I don't know and I'll get back to you."

Maybe we need to know bureaucratic skills:

Unless it’s absolutely necessary, don't go above the person's head - try to work it out with them. If you have to go above them in the hierarchy, clear it with them so that they don't feel they are being punished. A lot of times we meet people high up in the hierarchy at meetings and so we go to them about issues that really should be handled at a lower level, and end up alienating folks at those lower levels. Never burn bridges by embarrassing anybody!

As consumers, we don't have a lot of power and so when we go to the next person up in the hierarchy, they don't listen to us, they don't return our calls. So we get frustrated and want to go to the top. Unfortunately, we have to sit on our frustrations a lot.

Comment: The Drop-in Center wasn't getting paid. Often government funders tend to pay the most powerful contracts first and we tend to be at the end of the line. So the group hadn't been paid, salaries weren't getting paid. Letters had been written and phone calls had been made. One of the members of the center went over to the person responsible and said, "I'm standing here until you write this check." It worked, but you don't want to use this technique every time. Be sure to vary your techniques. It’s important to be assertive without putting people off.

It would be helpful to identify what the lessons are. Folks who are new to the management game don't know things that managers who've been around for a while live and breathe without thinking about it.

Also vignettes would be helpful, the ways people solve some of these things.

Often there is hostility and isn't just because we're consumers - there's the business competitiveness, undermining your credibility, etc.

5) How Do You Grow Your Organization?

The business of sales, marketing and development. We're pretty much funded exclusively by the government. Are there other ways to diversify our funding base - foundations, other entities. OEMing - Original Equipment Manufacturing - is a business strategy where Ford makes cars but you may be small company that makes turn signals. Your turn signals are distributed all over the place on Ford cars but no one knows about you. It’s a way of creating other relationships and strategies to market your services and get funding.

Comment: It’s been suggested that we find a corporate sponsor, so we aren't reliant on government and foundations. If the statistic of 1out 5 persons have experienced mental illness is accurate, and we hit enough corporations, we're likely to find one that has a personal interest in supporting us. Send as many interest letters to as many as possible. Enlarge your donor base - private doctors and therapists will send checks to our drop-in center. The county folks don't do this. People's parents will send money. If you're totally dependent on the County, you have to do what they say and when the budget cuts come, you're cut first because you don't bill for Medi-Cal (Medicaid) services and so you're not generating income for the county.

Comment: The Center on Self Determination, Oregon Health Sciences University is working on how to bill Medicaid for training people in the Developmental Disability sector. Usually you can't bill for training under Medicaid but they're constructing it as another activity. Since TA centers are basically doing training, this might be a way for us bill for matching funds.

Comment: In Florida, a drop-in center bills a lot of their services to Medicaid. A lot of the services we do in the centers would be billable if a case manager was doing them. So all you have to do is arrange with your county to have a half time person connected to your center who can then sign off on the services. Is this the direction we want to go in? It means keeping progress notes which often goes against the self help grain. On the other hand, progress notes could be one liners like "Mixed well with peers" means “They had a cup of coffee in a crowded kitchen.” "Improved personal appearance" means “they got free clothes out of the donations box and used the bathroom to wash up.” These have passed. You have to have a QMHP (Qualified Mental Health Professional) or licensed clinician who will sign off on it. And sometimes you have to have a QMHA (Qualified Mental Health Associate) not a licensed person who writes the notes. One line is written for every visit and then a monthly summary is written. In Oregon this means you can bill $26/hr. per person served. Capitation has been implemented so we can now only bill for about 40% of the people who come in because the rest of the folks have been capped. But this results in about $90,000/mo. for the program. This is under a Managed Care contract and they have waived the ordinary Medicaid requirements. Otherwise, Medicaid requires diagnosis, medical necessity, and a licensed clinician. In Oregon, these do still happen on paper, but not necessarily at the drop-in center.

To operate this way and get Medicaid funding you have to have a working relationship with another clinical sort of organization, or become one yourself.

One way, is to be very separate and contract with a medical director. Another is to be sited with a very large mental health agency.

In some counties, your program bills for Medical/Medicaid and those funds go to the General Fund, which is the big pot of money that funds your program but it doesn't go directly to your program.

Consumer run programs do 2 things: they provide services to consumers and they also employ consumers - which can greatly transform their living situation. Employed consumers can serve as role models for the members.

Comment: Consumers in leadership have to go through a different recovery process. The Mental Health system teaches us that we should expect to be guided. Jobs that explain everything they are supposed to do, every step detailed. In drop-in centers and consumer run programs, you make it up as you go along, because you don't know how to engage people. It takes awhile for people to feel empowered to do their own planning and create their own jobs.

People need to learn to make decisions.

How will consumer run programs survive if we aren't billing Medicaid for services?

There is pressure to blend in with traditional services. To hire Peer Recovery Specialists, WRAP trainers, etc in traditional mental health clinics. The peer staff may have the background in self help but how can they keep their values and their jobs at the same time? Blended services are cheaper than traditional. The jobs may be better paying than our drop-in centers but the centers will be different than what we started out being.

Comment: There's a concern about cooptation -decisions being made in the background by the providers or the mental health system. The system often doesn't hire enough consumers, so the ones who are hired are simply tokens and you can't have the impact. The culture of self help needs to be carried by many people. You can't promote it when you're individually isolated in programs.

People aren't coming back to the drop-in centers to work because they can get paid better elsewhere. County services pay better and civil service means you're set for life, benefits, etc. There's a strong urge for consumers to be professionals - the benefits, the credibility, the status and prestige of the identity. When I became a psychiatrist I found I couldn't change the system. I became a professional because I thought I'd have enough power to influence the system.

Many places the consumers hired into the system are supposed to check on whether the consumer clients are taking their medications.

We've proven that we are effective even if we are messy and unstructured. We're no longer the new program, we've been around for 15, 20, 25 years. Where is our funding going to come from? Do we just keep creating new programs? Or new ways to describe them?

The term Recovery has shifted in meaning now that the system is using it. It often is used to mean making an adjustment to living in the system. Most traditional providers think that the only way we can live is to live within the system. Consumers start seeing the system as a way to get affordable housing, education, etc.

In times of crisis we can show that we're cheap and provide for hard to serve clients. We visited legislators and most of them have some experience with mental health or a family member. We can capitalize on that.

Self help helps to connect people together and to create a sense of belonging - this creates recovery. It’s not just babysitting. As long as the biological model reigns supreme, self help will be considered a step-child, that it isn't a necessary thing for people to recover a place in society. We need to demonstrate that people get back into the world.

400 of us went to the state capitol, we advocated for stuff that is important to us. Self advocacy is part of recovery. We need to show that people aren't homeless mentally ill their whole life. We need to show that people do get out.

What we do doesn't just effect someone's feeling state but it helps them to change their lives. We need to fight for good jobs that don't necessarily require degrees and licenses. We can also visit local offices of our legislators, let them know we're voters.

Hunger issues can be related to our cause and they aren't likely to do mental health games with us. Build coalitions with other disability groups. Together we have a lot more power and resources. Welfare and CalWorks reform, and domestic violence have connections to us.

Elists can be a tool to market.

We don't have the rhetoric to present ourselves effectively politically. We hang our heads in shame. There's some ambivalence: Do we want to be seen as mentally ill? If not, what will happen to our programs? The dilemma with SSI - do we have a disability or are we like everyone else? We don’t want to be disabled but we like being covered by the ADA (Americans with Disabilities Act.) It tends to mix our message. It’s not safe to be out as a mental health client. Many members of the public don't realize how many of us there are and that they can't always recognize us.

We testified using system utilization costs before and after: I've cost the system $300,000 over 8 years before the movement and the 13 years after I've cost maybe $30,000. I’ve been totally out of the system for a year. Find the bootstrap, we'll pull ourselves up. We could have T-shirts with dollar signs on them.

Maybe we need to have another session on media and how to sell ourselves.

We're in a triangle: providers, consumers and family - we can get caught in dissing each other. Many of us belong to all 3 groups. Is it possible to be a crazy person and get funding or do we have to become providers or be recovered?

Announcements

Mark - Unlimited Forced Drugging ok’d by courts 8th Circuit Court of Appeals. Letter from American Assn. of Physicians

NEC-west is moving from ILRC in San Francisco to MHCC in Concord.

Bill will work on a Tool Kit that will be available to everyone.

NEC got funding for one more year. The letters helped.

Notes submitted by Carol Patterson