The wurster, the better

I am one PA citizen who is extremely concerned with the proposed cuts that the proposed budget is stating. I am especially unhappy of the proposed cuts in the Department of Public Welfare for mental health services and health care services and autism services. Why? Because we have a daughter who needs these services and will for the rest of her life. And there are thousands across the state (over 20,000) who need these services.

Governor Rendell is proposing a tax increase to help provide these and other services from the state. I agree and am happy to pay my fair share. Others are not happy and are bickering and not passing the budget. It was brought to my attention that Senator Dominic Pileggi recently made an outlandish statement and I quote:

In addition to those substantial new investments in our public schools, the Senate-approved budget protects public safety by providing increased funding to the Pennsylvania State Police and the Department of Corrections. The social safety net provided by the Department of Public Welfare will remain strong with a funding increase. And funding for many other key programs – such as children’s health insurance and autism services – will be maintained or increased.

Shouldn’t we believe him when he says that “children’s health insurance and autism services – will be maintained or increased” in the budget? I guess I would question how he comes to that conclusion in light of all the data that the public has to the contrary. Everyone else is saying that with the current proposed budget, many, many millions of dollars will be cut from the Department of Public Welfare, not increased.

Where does the Senator get the audacity to make such an outlandish statement.

Here is a link to the complete post by the Senator so you can take his statement in context — Enacting a Responsible State Budget By Senator Dominic Pileggi

I haven’t posted in a long time because i really don’t have much good to say of what has happened over the last 6 months or so. I am frustrated with many things but mostly with the behavioral health / mental health system in Pennsylvania. And so I write.

If people would only do a little bit more than just their job, everyone would benefit. Don’t just do the minimum to get the job done, go beyond and actually try to help your client. We are in a situation now with a company that we shouldn’t be. And if you were in such a situation with a business, a store, a consultant, a plumber, whatever, you would immediately drop that person or business and replace them with another who would give you better service.

I subscribe to a lot of lists and got some information from Mental Health America about parity legislation for people with mental health issues. Check out their site and the following:

IF…
parents had to give up custody of their children for them to receive treatment for cancer…
If people with heart disease ended up on the streets or in prisons because they couldn’t get help…
If businesses lost billions of dollars due to avian flu…
If 30,000 people died each year due to airplane accidents…

This nation would demand action.

When it comes to mental health disorders, there are no “ifs.” Loss of child custody, homelessness, incarceration, lost productivity, and an epidemic of suicide are realities in communities across the country. Mental health is fundamental to overall health and research confirms the link between mind and body and demonstrates that mental illnesses are treatable when individuals have access to appropriate services.

We call on Congress to embrace our Vision for Change and make mental health a national priority to ensure wellness for all Americans.

Our Vision for Change:

1. Eliminate discrimination in access to mental health care.
2. Invest in research, prevention, recovery and consumer-led strategies that improve the quality of care for individuals with mental illness.
3. Invest in children’s health and emotional development.
4. Promote adoption of research on effective treatments and individualized care into routine clinical practice.
5. Promote a holistic approach to wellness by integrating behavioral and primary health.

Please consider signing the petition at Mental Health America and contacting your legislators.

There are many systemic problems with government, education, and the health systems. I am mostly concerned (at this point) with the mental and behavioral health system specifically in Pennsylvania.

I sent the following email last year to a bunch of people I knew of or had contacted in the state and / or mental health systems from working on a DPW Children’s Behavioral Task Force a couple of years ago. I felt I had nothing to loose and may even get some surprising results. However, I was wrong.

Sent: Tuesday, August 22, 2006 8:45 AM
Subject: state of the behavioral health system

> Since I had this all-inclusive email list, I thought I would use it to send a suggestion (and complaint) to all of the parties who would appear to be involved in making the children’s behavioral health system work better. If I am out of line, then I am sorry. But being a parent, I must be my daughter’s advocate and try and make things better. That’s why I participated in the task force.
>
> My suggestion is that the tracking and reporting system used to monitor the service providers and organizations like Magellan, need one minor update which should help our children get the services they need (providing they are available which is my other concern). So, let me give you a real example of what I am talking about. Magellan authorizes services for my daughter. They are supposed to monitor our current service provider and how well (or not) he is doing. They have authorized 12 hours a week TSS services but we haven’t received these services since February. I know that it’s the parents right to make a complaint to Magellan, but we chose to work with our provider (the better alternative). Unfortunately, a lot of time has passed. If Magellan or DPW had a way of seeing that these hours had been authorized but not been billed for, then a flag should have been raised to indicate a problem. A system mod will help.
>
> That’s the first part of the problem. The second part is basically that there are not enough qualified support people in the behavioral/mental health industry. So, even if a flag was raised and waved frantically, there wouldn’t be anyone to provide the services to our daughter.
>
> I just want to help make the system better and ensure that our children get the services they need.
>
> Thank you for listening.
> jim wurster

So, being in the same situation again this year, I sent out another email.

Hi everybody,

It’s been almost a year since I sent out the email below complaining about the state of our mental health system in Pennsylvania. I apologize again, but since I am a parent, I need to be my daughter’s advocate.

We are now in the same situation as we were last year. It’s been 4 months since my daughter has had TSS services. This is ridiculous. Apparently this is a pervasive problem in Delaware County. I just spoke with our BSC and their company and from her perspective, all providers in Delaware County are looking to hire BSCs and TSSs. This is not the case in Chester County. All of their clients are being serviced there.

Why is that?

I was also told (and this is not our case) that in the last month or so, she has gotten 12 denials of services for her clients when she never had this happen before.

Why is that?

Where does the funding go if it is not used?

Why can’t this money go with the client to be used to best service the client, especially if there is no staff to provide the services?

Is there a problem with Magellan?

I would really appreciate someone following up on this. My home number is 610-328-3824.

Thank you,
jim wurster

I sent this last Thursday and did get a call from someone in Child Welfare who had my email forwarded to him. After explaining the letter, he assured me that he was going to contact the appropriate people in the state. He said he would follow-up with me this week.

Today I got a call from the case manager at Magellan giving me an update. The provider is doing his best to find someone and so are they. His suggestion was to contact OMR to see if there was some waiver funds available for support. It sounded like there was no short-term solution to the lack of wraparound support in Delaware County. So, he called our case manager at OMR and left a message.

Could we hire someone to provide the services? No, they have to be hired by one of the providers and meet the DPW requirements.

Is there any way of using the state funds in some other way by us? No.

But he did say if we knew anybody who wanted a job, to contact our service provider or Magellan.

At this point I just want to scream. This is just so stupid.

I started writing this as an email to someone, but then realized I should expose the world to my ideas. After all, that is the purpose of a blog.

We are about to become involved with a local university’s mentoring program. It will pair up a graduate student who is seeking a career in the behavior/mental health system. It sounds like a great opportunity for a graduate student to get exposed to families with children who have disabilities and therefore to get real-life experience. It’s always nice to be able to see what you are getting into before making a final commitment. As I see it, the behavioral health and mental health industries are severely lacking in enough qualified staff to support all the people who need various kinds of services. And our daughter is one on these people. So, we thought this program would be a great opportunity for the university and would also provide some peer-related services for our daughter (which she is lacking). She has been in the “system” and getting wraparound services since the summer of 2004. She has complex disabilities and the need for getting services for her is critical.

We are currently in a situation where our behavioral health service provider has not been able to provide TSS services for our daughter for at least 2 months. This situation also happened last year at the beginning of the year when our daughter lost 5 months of services because there was no staff to provide them. Apparently, this is not just a problem with our provider, but rather a problem across the state with all providers. They have advertised and held job fairs, etc., but cannot hire enough people to meet the need.

Our daughter is on a shared resources list. What does this mean? Well, it means two different things. When I heard this a couple of weeks ago, I interpreted it to mean that our daughter was on a global list whereby other service providers could possibly pick her up if they could provide the support. And this is one level of this shared resources list. I think it meant that she was on a shared list withing our provider’s own resources.

In any case, I think from the conversation I had with Magellan and our service provider on Friday that she is now of the global shared list.

This industry like others has it’s own terminology which sometimes confuses the heck out of me.

So in this conversation I was trying to brainstorm ideas and solutions.

I thought

“why couldn’t university graduate students fill the need of not enough staff until a permanent solution is found?”

By this, I mean (especially over the summer and beyond) that a grad student could interview with a service provide and hopefully meet the criteria for the TSS position. If this works out, the student could then work part time to provide these needed services to clients like our daughter.

But there are criteria and rules and regulations that dictate who can be qualified staff. It’s not for lack of money from the state, because that is there. with Magellan authorizing these services. It’s just that there are not enough people to provide these services. A crazy analogy is people who are waiting for transplants (heart or liver). They have a need but there just aren’t enough organs to go around and be there for everyone who needs one.

There has to be a solution. Is it better to provide no services to someone who needs them or to provide some services to them even if only 10% progress is shown? And that’s another part of the system. Meaningful progress has to be made. So there are evaluations and interviews and reports and a lot of paperwork that service providers must provide to the state. But why doe sit have to be so complicated, especially in our case. We just want someone to assist our daughter, be a peer support, be a buddy, be a friend. And we also want to learn how to work with our daughter from these people.

We are even willing to pay for these services, if they could be found. And this is something I would like to pursue with the university mentoring program. If the graduate student is amenable to this and has the time, we would like to pay the student a stipend to provide some services to our daughter. Again, just thinking out loud and trying to get some responses from out there in the internet. If I’ve misstated things, I hope someone will correct me.