Gap Analysis completed for The Division of MHDDSAS
Feedback to the Division of MHDDSAS regarding service gaps and needs for report to the General Assembly March 2010 (prepared by public policy committee with input from the consumer council)
- Need for a functional crisis response system that is embedded within a system defined by continuity of care for those most in need.
Certainly NC has made a tremendous effort to intensify the services necessary in times of crisis to fill the gaps created through system upheaval in reform. We believe a return to inpatient services available locally (these used to be required in rule) is a great step in the right direction, as is the addition of additional models such as CIT, mobile crisis, facility based crisis options, etc. However, individuals continue to cycle in and out of state institutions, sometimes as many as 4-5 cycles per year, with no clear plan upon discharge about what will change. It is time to get timely discharge plans into the hands of the providers who will pick up the care for the person, time to examine more closely the person centered plans and why the crisis plans embedded therein are not working. We must address more clearly accountability and responsibility- are LMEs allowed to require crisis plans from their providers? Can they insist that a copy be sent to the local inpatient facility and as well to the LME so they can get it to the right people at the right time? Minimally the LME should have the document on file electronically, and it should be shared with the treating providers, and with the applicable hospital. And the quality of the crisis plans needs to improve through robust review and monitoring and a system of consequences for those who are not complying with good care. As we move towards the inclusion of paid peer support, the crisis plans should include a linkage with a paid peer support upon discharge from any state or local inpatient bed. With that support, from someone with lived experience, we may see this turn around.
Discharges to homeless shelters has improved in NC, but largely for those who have been hospitalized 30 days or longer, which is a very small number of the total admissions. We need to look at the length of time people are receiving necessary hospitalization to ensure that they are stable before discharge. And perhaps we need a temporary housing situation, perhaps a small specialty waiver, so that absolutely no one gets discharged from our state hospitals to a homeless shelter. In FY 2009 there were 459 discharges to shelters, while in FY 08 there were 1192; a great improvement, but still 459 too many.
- Housing
NAMI NC has a fear that with so much funding going towards crisis service development that there simply won't be enough left for housing. After all, people are only in crisis for a fraction of their life in any given year, the rest of the time they need safe, affordable, decent housing.
Individuals with mental illness often have difficulty securing housing, primarily due to very limited incomes. Studies show that providing affordable housing for people with mental illness helps with long term recovery and reduces incidents of crisis, including hospitalization. North Carolina has a history of strong partnerships in providing long term housing to individuals with disabilities, including the recent "Housing 400" initiatives that have leveraged state, local and federal funds to add more than 1000 units of housing .The problem is that 1000 units isn't nearly enough to meet the demand: there are 5,000 people with mental illness in adult care homes who could live more independently and while discharges from state hospitals to homeless shelters have decreased by half, even one discharge is too many. We need to have l000 more funded next year
A second area of housing needing attention is that of people with mental illness who have been placed in family care/adult care facilities not intended to serve their particular illness. The Supreme Court in NY recently found that this type of wholesale placement is not only inappropriate, it is a violation of federal law. An expansion of the options provided through the "Housing 400" program would meet the needs of many of these individuals who are inappropriately placed and may in fact present dangers to themselves and the older population living in these facilities.
With more than 5,000 people with mental illness in family care and adult care facilities, the state needs to invest in solutions for residential services that support independent living: supported housing (housing with services built in or connected ), group homes for people with mental illness, and independent living with service dollars tied to the housing and person so those without Medicare or insurance can qualify for safe stable housing that meets their unique needs. These needs go beyond the 10m for "Housing 400" and require the long term support of additional service funds of 7 million per year to begin reducing the number of people with mental illness in adult care home/family care homes.
- The right treatments available at the right time, throughout NC
North Carolina has certainly struggled with getting the right treatment mix, with marked lack of success in the Community Support debacle. Years ago, there were requirements that all public programs ensure the availability of a continuum of services in their catchment areas. That requirement went away with reform, and it is time to bring it back. No matter where you live in NC, you should have access to ACTT for example, one of six SAMSHA recognized evidenced based practices (EBP). Also, people should have available within a reasonable drive access to a good psychiatric inpatient bed. We need to make sure that we provide what works, not just what providers, or others advocate for. An example is Integrated Dual Diagnosis Treatment (IDDT) - another one of the six EBP approved by SAMSHA. While you can conceivably figure out a way to bill for this, it is very hard, and therefore it simply doesn't happen.
Another example - NAMI NC provides natural supports in the form of family psycho education - another SAMSHA EBP that is not included on our menu of billable services. We believe it would not be a good fit for fee-for-service, but we also believe it is one of the most effective, and inexpensive (think volunteer) services out there- but we need more funding for getting it everywhere in NC . We advocate the old principle of "if you build it, they will come" - the way to get these treatments readily available is to make them a clear service definition, get it a rate, and make it available for billing. Then you need to reward those who get good results from providing the right treatments, by giving rate differentials for achieving certain outcomes - like keeping people out of jail, helping with employment, decreasing hospitalizations, aiding in recovery.
A lesson learned to accompany making sure the right treatments are accessible is that we must do better to train providers consistently, in an ongoing manner, to provide those services in the right way. Our training model does not work. Let's create what is called in other states Centers of Excellence, where linkages between universities and the Division of MHDDSAS connects research with practice through regional centers. These are small, inexpensive, but work to motivate providers to use treatments that work, trains them to do the work with a fidelity to the model, and monitors them in their work.
Employment is an EBP for which we have a service definition, but it is not working as well for those with mental illness as it could and should. Perhaps with a focus through the Centers of Excellence, NC can begin to experience much greater success with supported employment for those living with mental illness.
The introduction of paid peer supports is an excellent advance in North Carolina, but it must be accompanied by a system of care that really values recovery, and aids in people's recovery by having access to training, support, and services that are targeted towards illness management and wellness/recovery. People with mental illnesses truly have modest needs- let's make recovery a centerpiece of our system, not an afterthought. It should be woven into all rules, laws, practices, etc.
- Decriminalization
We are so proud of the excellent work done around the state in training police officers to recognize mental illness and take people to treatment rather than jail (CIT- pre jail diversion). But the problem remains: all police departments must buy in and be trained. Those who were incarcerated before that program existed all too often still remain incarceration. We must advance our reform of the prison rules that process has taken far too long. Rule making needs to be re-examined and streamlined so necessary reforms can take place when problems are recognized. Transition planning from prison and jails must be improved according to newer findings on what works. People must have access to the medications that work while they are imprisoned; and they should not be forced to change medications without a consult with their primary psychiatrist. We must figure out a way for providers to become involved in the transition planning and get paid for that work - through forensic case management or forensic peer support.
- Access to Medications
Medications truly do work differently on everybody. While we must spend the public dollar wisely, to stretch it to serve so many needs, following what may be decades of trial and error to find the right medication, no one needs to be forced to change to a cheaper form of the medication. NAMI NC believes that we should look at cost, the doctor and the patient alike, in making a truly informed decision on medication. We also believe that if someone is new to the diagnosis, and just trying medications, that is a good time to try a generic. But we are opposed to further barriers being established, such as prior authorization requirements, between the person needing medications, and getting their needs met. Too much research has shown that any barrier can be a reason to simply not take medications. Medication compliance is already an issue- and for many good reasons; the side effects can be devastating. But we know medications in combination with supports and therapies really work- let's let them work by maintaining open access.
A second area of concern is just having the money to buy needed medications. Compared to the cost of a day in an institution, even the most expensive of meds becomes small in comparison. Yet our public support for funded medications for indigent groups has declined with the economy. This is a perfect example of pound foolish, penny wise. Let's rebuild our psychiatric medication assistance fund, and help people stay out of the more expensive hospital setting.
A Thousand Stories Project: the impact of cuts on those living with mental illnesses
Some months back the Coalition had a very successful press conference describing the impact of cuts on real people, living real lives. This gained a lot of media attention and put the focus where it should be: no more cuts to mental health! A follow up strategy is to collect stories documenting the impact of budget cuts on those receiving services who may be cut back or may lose services entirely. We are also looking to document the impact on the loss of jobs and the potential closure of providers- all signs of disarray in an already chaotic system.
Please take the time to fill out the survey- you can fill it out multiple times if you find your circumstances continue to change and deteriorate. There are three surveys: for those individuals who are receiving (or losing) services, for employees and for providers. This survey will be active between December l and June 30, 2010. To tell your story, simply click here:
We will use these stories to reach decision makers and the medica and legislators - they need to hear the impact of the legislative decisions to cut our service system so severely. Remember, when we last made a call to action at the time of the cuts- the Governor actually rescinded l5M in cuts to mental health; so your voices, your stories, are effective. I head at the last Legislative Oversight Committee that the Governor is asking for more cut scenarios- 3-5-7M- this is the last thing we need. Help make sure this doesn't happen - tell your story- jump on the survey monkey.
CABHA
The Critical Access Behavioral Health Agency (CABHA) is a movement toward quality providers, with a range of services within their organization that can facilitate some one stop shopping by those who may have needs that change over time. Like any major change, the devil will be in the details and the unintended consequences- especially for small providers, in rural areas that have an absence of larger providers. Each provider (whether it be non profit or for profit) must provide the following services:
comprehensive assessments
medication management
outpatient therapy
In addition they must provide two additional enhanced benefit services in a sensible array
(say for children, or a range crisis services for adults)
Peer Support and Case Management may only be provided by CABHAs. The move to improve quality is on the heels of the many problems plaguing community support- fraud, misuse, overspending, too many providers - many more than were actually needed- and too many pour outcomes. To enforce quality, there are requirements for psychiatry time, clinical director time, and training director/quality improvement staffers. If you have more than 750 cases, the provider would have to have full time staff in these areas.
What are the worries with CABHAS?
- Many small, specialized but excellent providers will not be able to stay in business if all the referrals stay with the CABHAS
- How will referrals flow from CABHAS to non CABHA providers
- Many clubhouses offer enhanced services now- this won't be allowed, so a good network of support for those being currently served will once again be disrupted
- CABHAS may keep all the referrals for themselves; there is a conflict of interest in that they do the assessments, it has been shown that in the past those who do the assessments determine that those assessed need the services they provide.
- Many people with mental illnesses have coexisting substance abuse disorders: it may be hard to get integrated care because one CABHA may specialize in one disorder, and another in the other.
It's complicated, and it is an issue that probably needs more time. Yet, the financial difficulties with the old way of having so many small providers did not work either and needs some sort of fix. Here is a link to a story produced by WUNC just today on the CABHAS:
http://wunc.org/programs/news/archive/NRH0120.mp3/view
Peer Support Progress
Yesterday Mike Weaver and I met with Mike Watson, Tara Larson and Flo Stein regarding concerns about training capacity for peer support, and issues with the definition. We are recommending formation of a task force comprised largely of peer support specialists to guide the state's efforts in rolling out this important new service. We are incredibly excited about this new billable service and know that it will be an important part of the continuum. It values the role that those in recovery who want to work in human services can play; lived experiences mean a lot to someone else who is just beginning to face that the helper has weathered and survived.
NAMI Representation on State Committees
Long a sore spot, I am happy to report that things are improving! Our voices are beginning to be heard. Here are some of our recent appointments:
- Commission of MHDDSAS
- State Medication Committee
- Institute of Medicine Committees (Michael Weaver- adult care homes; Deby- veterans issues)
- Stakeholder issues on Community Support and on Residential Committee
- We're working to appoint someone to the Medical Care Advisory Committee (MCAC)
- Always looking for those interested in serving on LIfe Plan Trust Board (meets in Chapel Hill quarterly)
We're always looking for volunteers to serve on statewide committees ; let Deby know if you are interested in this!
Don't forget - the Eastern Regional Conference (open to all) is February 27 in Greenville- register on our web page; the $l0.00 registration includes lunch - what a deal!
Deby Dihoff
Executive Director
