A Report on the Public Comments Submitted to the President’s New Freedom
Commission on Mental Health
Prepared for: The President’s New Freedom Commission on
Mental Health |
|
Prepared for: The President’s New Freedom Commission on
Mental Health |
|
EXECUTIVE SUMMARY
The President's New Freedom
Commission on Mental Health solicited public comment from stakeholders in the
mental health community on various topics related to the Commission’s mission[1]. The goal was to gain a better understanding
of the public’s experiences with, concerns about, and hopes for the mental
health care system. More than twelve
hundred individuals submitted comments to the Commission. Comments were submitted from all 50 states,
the
The Commission solicited public comment on the following topics (number of individuals commenting on this topic is shown in parentheses):
1. Access to mental health
services (767)
2. Extent of coordination of
mental health and support services (946)
3. Extent to which people with
a serious mental illness or serious emotional disturbance live, work, learn,
and participate fully in their communities (710)
4. Programs or practices that
work well or improve your experience of care (482)
5. Other comments (593)
Trained staff reviewed each comment and coded its content according to a coding scheme designed to encompass the full range of topical themes addressed in the comments. The coding scheme consists of 25 categories. Fifteen of the categories represent the Commission’s Subcommittee areas, while the remaining ten categories represent broad themes that cut across Subcommittee areas and appear frequently in the public comments.
This report summarizes all the comments received
through December 2002, whether by mail, email, or through the web site. The report is organized by the topics above
on which individuals were asked to comment.
Within each topic, frequently mentioned themes are highlighted and
illustrative comments featured throughout.
Copies of this report can be obtained from the President’s New Freedom
Commission on Mental Health web site at http://www.mentalhealthcommission.gov.
Nearly all stakeholders
describe a system in which access to desired services is very problematic,
resulting in over reliance on crisis management rather than effective illness
management. Stakeholders describe a wide
range of systemic barriers including inadequate funding for services and
supports; gaps in service and provider availability; absence of culturally
competent services; lack of systemic orientation to recovery; inability to obtain
insurance; lack of mental health insurance parity; low benefit limits;
excessive management of mental health benefits; poor coordination among mental
health service providers, supportive services, and schools; difficulty
enrolling in indigent care programs; and high service cost. The challenges of living in the community
with a mental illness are another important theme, including the problems of
stigma, unemployment, inadequate housing, inadequate income supports, and far
too frequent involvement with the criminal justice system. The comments of these 1,205 stakeholders
clearly illustrate the very real challenges faced by
CONTENTS
Page
EXECUTIVE SUMMARY
BACKGROUND.............................................................................................................. 1
Table 1. Coding Categories for Public Comments............................................ 2
Table 2. Number of Persons Submitting Comments by
State.......................... 3
PUBLIC COMMENT FINDINGS BY TOPIC.............................................................. 5
Topic 1: Access to Mental Health Services................................................. 5
Inability to Access Desired
Services............................................................... 5
Barriers to Accessing Desired Services........................................................... 13
Topic 2: Extent of Coordination of Mental Health
and
Support Services...................................................................... 23
Breakdown in the Continuum
of Care.......................................................... 24
Coordination
of Children’s Services............................................................. 25
Integrated Treatment for Co-Occurring
Disorders........................................ 26
Family Involvement in Treatment.................................................................. 27
Mental Health and General Medicine Interface............................................. 28
Topic 3: Extent to Which people with a Serious
Mental Illness
or
Serious Emotional Disturbance Live, Work, Learn,
and
Participate Fully in Their Communities................................... 30
Stigma........................................................................................................ 30
Need for Support Services.......................................................................... 31
Employment and Income Support................................................................ 31
Housing and Homelessness.......................................................................... 33
Criminal Justice Involvement........................................................................ 34
Successful Community Participation............................................................. 38
Topic 4: Programs or Practices that Work Well or
Improve
Your Experience of Care................................................. 39
PUBLIC COMMENT CODING METHODOLOGY................................................... 41
APPENDIX
Coding Categories for NFC Public Comments......................................................... 43
BACKGROUND
The President's New Freedom
Commission on Mental Health solicited public comment from stakeholders in the
mental health community on various topics related to the Commission’s
mission. The goal was to gain a better
understanding of the public’s experiences with, concerns about, and hopes for
the mental health care system. As stated
on the Commission's Public Comment Web Site, “The purpose of obtaining public
comment is to assist the Commission in formulating an action plan for the
President that will improve
Twelve hundred and five individuals have submitted comments to the Commission. Individuals submitting comments are asked to select their primary affiliation from a list of stakeholder groups. These stakeholder groups, along with the number of individuals posting comments in each group (in parentheses) are:
·
Mental Health Professional/Provider (337)
·
Consumer of Mental Health Services/Survivor (329)
·
Parent/Guardian/Adult Caregiver (for children with emotional disturbances)
(140)
·
Family Member (135)
·
Advocate (45)
·
Private Citizen (37)
·
Educator (16)
·
Researcher (13)
·
Other (153)
Trained staff reviewed each comment and coded its
content according to a coding scheme designed to encompass the full range of
topical themes addressed. The coding
scheme consists of 25 categories.
Fifteen of the categories represent the Commission’s Subcommittee areas,
while the remaining ten categories represent broad themes that cut across
Subcommittee areas and appear frequently in the public comments. The topics included in the coding scheme are
presented in the following table, along with a count of the number of comments
received on that topic.[2]
Table 1. Coding Categories for Public Comments
Group |
Category |
Persons Submitting Comments |
Age |
Children |
293 |
Older Adults |
18 |
|
Special
Populations |
Consumer Issues |
500 |
Criminal Justice |
91 |
|
Families |
131 |
|
Homeless |
23 |
|
Rural |
68 |
|
Services |
Co-Occurring Disorders |
74 |
Employment & Income Support |
219 |
|
Evidence Based Practices |
271 |
|
Housing |
104 |
|
Medicaid and Medicare |
174 |
|
MH Interface with General Medicine |
81 |
|
Medication Issues |
204 |
|
Suicide Prevention |
59 |
|
Access |
Coordination of Services |
314 |
Rights and Engagement |
280 |
|
Cultural Competence |
159 |
|
Financing/Reimbursement |
539 |
|
Hospital |
94 |
|
Policy/Regulations (State or Federal) |
172 |
|
Managed Care |
176 |
|
Parity |
98 |
|
Restriction or Lack of
Services |
741 |
|
Stigma |
249 |
|
Transportation |
60 |
|
Challenges in Community Life |
340 |
The Commission solicited public comment on the
following topics (number of individuals submitting a comment on this topic is
shown in parentheses):
·
Access to mental health services (767)
·
Extent of coordination of mental health and support services (946)
·
Extent to which people with a serious mental illness or serious
emotional disturbance live, work, learn, and participate fully in their
communities (710)
·
Programs or practices that work well or improve your experience of care
(482)
·
Other comments (593)
Table 2. Number of Persons Submitting Comments by
State
State |
Number of Persons Submitting Comments |
|
|
5 |
|
|
10 |
|
|
16 |
|
|
22 |
|
|
93 |
|
|
20 |
|
|
9 |
|
|
2 |
|
|
3 |
|
|
61 |
|
|
13 |
|
|
1 |
|
|
2 |
|
|
14 |
|
|
2 |
|
|
27 |
|
|
18 |
|
|
12 |
|
|
12 |
|
|
15 |
|
|
36 |
|
|
21 |
|
|
7 |
|
|
44 |
|
|
26 |
|
|
45 |
|
State |
Number of Persons Submitting Comments |
|
|
3 |
|
|
2 |
|
|
35 |
|
|
2 |
|
|
6 |
|
|
11 |
|
|
44 |
|
|
8 |
|
|
8 |
|
|
64 |
|
|
36 |
|
|
13 |
|
|
27 |
|
|
66 |
|
|
8 |
|
|
10 |
|
|
2 |
|
|
19 |
|
|
47 |
|
|
8 |
|
|
19 |
|
|
5 |
|
|
22 |
|
|
25 |
|
|
7 |
|
|
1 |
Table 2 above shows the number of individuals submitting comments by State. This report represents the findings from a review of the public comments submitted through December 2002. The 1,205 comments show a remarkable consistency across stakeholder groups. Stakeholders do vary in their perspectives of the mental health system, with family members and consumers often presenting emotionally charged stories from their lived experience with the local mental health system. Nevertheless, a number of shared views of the current mental health system emerge, cutting across nearly all stakeholder groups. This report summarizes those shared views and highlights the special concerns of certain stakeholder groups. Copies of this report can be obtained at the President’s New Freedom Commission on Mental Health web site at http://www.mentalhealthcommission.gov.
The preponderance of comments reflects stakeholders’ difficulties or disappointments with the mental health care system as currently structured. A few stakeholders commented positively on care received or experiences within the treatment system. But the comments primarily express concern over the current state of affairs, in many cases noting the difficulties of the stakeholder’s personal situation and/or that of family members.
PUBLIC COMMENT FINDINGS BY
TOPIC
Nearly all stakeholders describe a system in which
access to desired services is very problematic, resulting in utilization of less
desirable crisis management alternatives rather than effective illness
management. Consumer and family members
address the difficulties they have accessing the particular kinds of services
they need. Often, specialized treatment
is not available, e.g., treatment for persons with posttraumatic stress
disorder or for children with bipolar disorder.
More frequently, comments simply address the lack of access to the
services consumers need.
In extreme cases, the stakeholders describe
situations in which the lack of mental health services leads to involvement in
other systems such as criminal justice.
Many stakeholders describe situations where a lack of appropriate mental
health treatment seemed to have contributed to the consumer’s incarceration.
Consumers and providers note that
the lack of desired services leads to over utilization of less desired services
that are often more expensive. For
example, the lack of properly supported housing leads to unnecessary inpatient
hospitalization. In some cases the services exist but waiting lists or lack of
reimbursement render them inaccessible; in other cases the community just
doesn’t provide the service at all. This was especially true for those living
in rural areas. But it is interesting to note that both providers and consumers
discuss the difficulties with the overall service continuum, not just the
presence or absence of particular services.
Consumers and family members also note that access to services is difficult
when they have no way of knowing what is available, and many express an
interest in more consumer-run services.
Below we summarize stakeholders'
comments on particularly desired services which they found difficult (sometimes
even impossible) to access. In the next
section, we describe the barriers to accessing these desired services, as
identified by stakeholders.
The Commission received dozens of
comments about consumers unable to secure desired support services,
particularly for supported employment, housing, and case management. These
Our daughter does not get any support services other than getting her rent paid. No one helps her with her eating a good diet, getting her clothes washed or anything. We do what we can and now her total care has been left up to her family. She wanted to have a job but no one was there to help her … She attempted to work but was fired due to a lack of behavior control. She received no employment assistance … She probably could work part-time if she had someone to work with her and the employer like they are supposed to do but don't. …We had a difficult time getting any services for our daughter. We finally obtained them through a court order.
A father from
In spite of the fact that my daughter has been hospitalized several times, she has never had a caseworker. She had no help at all after she came home until we got her into the local mental health system. Some of the larger hospitals promised team meetings that were never held. Doctors never explained her illness and never offered suggestions about how I as a caregiver could help.
Family members caring for their
adult loved ones with serious mental illness cite the lack of support groups
for family members in this situation, as well as the need for more family
member education. Parents of children
with severe emotional disturbances tell the Commission they must curtail
outside work to stay home and care for their disabled children, often resulting
in financial hardship for those families who are already beleaguered with the
cost of treatment for their children. A
number of stakeholders stress that both parents of children with serious
emotional disturbances and the aging parents of adult children with serious
mental illness need support services for themselves, respite services in
particular, without which they may become unable to adequately care for their
disabled children at home.
A nurse writes:
Families seem to be the most left out and they need all the support they can get to maintain equilibrium for themselves. It is extremely upsetting to have a loved one affected by mental illness. They fear suicide by their loved one or sometimes that there will be harm done to them or other family members if the affected loved one is violent in their illness.
Dozens of stakeholders tell the
Commission that medications are absolutely critical to managing their mental
illness and functioning in the community.
Yet, they are often unable to obtain the needed medications, obtain the
medication before their prescription runs out, or obtain competent medication
management services. Many report long
waiting periods for a medication evaluation or medications change appointment,
often two or three months, and even up to six months. Family members and consumers describe legal
problems or even incarceration that occurred when consumers went without needed
medications, consequently became manic or psychotic, and were arrested.
Finding effective medications
without severe side effects is a complicated process and usually requires
multiple medication trials and the time to adjust dosages to the proper
therapeutic level, many stakeholders report, yet it is often difficult to
obtain these types of competent medication management services. Also important is education about each medication's
side effects, which seldom occurs, according to many stakeholders. Writes one consumer:
Most of us
get 15 minutes with our doctor once a month or once every two months and a few
minutes with a nurse periodically. This
is not adequate time for those of us who need medications tailored to our
individual biochemistry to get the attention necessary to put us on the best
medications for us as individuals, at the lowest possible dosage with the least
possible side effects. For those of us
with serious and persistent mental illness, this is grossly inadequate.
A large cross-section of
stakeholder groups notes a gross lack of quality services for children and
adolescents. Many parents report there
seem to be no services available for their children unless the child becomes
suicidal or homicidal. Others note a
severe lack of services for adolescents, in particular.
These
When my son
first became ill we were totally adrift … help from the “system” was very
difficult to obtain... He was hospitalized nine times the first year of his
illness. He was 17 when the illness
struck and 18 when the first year was over. When he was released from the
hospital, local wrap-around services were almost impossible to obtain. Case
management was fragmented, case managers seemed to have no training...some
really tried and cared, but they soon burned out and left. Psychiatric appointments were months apart...
medicines were prescribed with no education as to side-effects...twice we went
to ER due to side-effects.
Many parents of school-aged
children with serious emotional disturbance report that schools fail to meet
(or sometimes even recognize) their children's special education needs in the
classroom. A parent of a child with
serious emotional disturbance writes:
They
public school offers a special education class but so far there hasn't been
help with the main issue of his behavior.
Also, the class is made of kindergarten through second grade. My son is second grade with no known learning
disabilities and so is not challenged.
Not progressing academically and not learning social and coping skills
makes me wonder what is the purpose of this class.
A parent whose son died two years
ago at age 22 years writes:
He had
ADHD, was bipolar and emotionally disturbed.
All these conditions were present at his birth...The symptoms show up as
behavior. I had a teacher complaining
about him say, “If they would just give that kid the spanking he deserves, he
would straighten out!” I asked if she
advocated whipping to stop an epileptic seizure or diabetic coma. Of course, she indignantly said she
didn't. I asked her, if that was the
case, why was she advocating child abuse as a cure for birth disorders? The level of ignorance about what mental
illness is (and what it isn't) is appalling.
While care in the community is
always preferred, there still exists a need for hospital-based services,
according to many stakeholders commenting on this topic. One mental health professional writes:
The
hospital is part of the answer. At
times, people with a mental illness will relapse no matter how compliant they
are with medication and needed services.
For the most part, we can lessen the need for hospitalizations but never
eliminate the need for them.
Dozens of stakeholders lament
brief hospital stays of two to three days as insufficient to stabilize most
acute care patients, as well as the severe shortage of inpatient beds in
general, and for acute care needs in particular. Access to inpatient services for children and
adolescents with severe emotional disturbances is cited as especially
problematic, with children frequently placed in facilities in distant states,
hours away. A family member writes:
Recent
experience with a family member was that the insurance company was only willing
to pay for a person to be hospitalized for one or two days. They did not want the person to be
hospitalized for the time required to stabilize them. I was forced to bring home my family member
in such a drugged state that they could not function, but it was the only way
to keep everyone safe. Even though the
person was self-mutilating I was told the person was not ill enough to go to a
State hospital...Our mental health system is woefully inadequate.
Consumers in crisis do not want to
seek care at hospital emergency rooms, which are ill equipped to handle the
needs of the mentally ill. Writes a
provider from
The State
has closed acute inpatient beds due to budget cuts and clients needing
inpatient care now wait for days in emergency rooms.
Many persons write the Commission
that recovery from serious mental illness is possible, and many say they are
living examples of this. Some of these
individuals say the current mental health system is antithetical to recovery;
the system relies too heavily on psychotropic medications and assumes that
mental illness is chronic; "professionals" are the experts, and full
recovery impossible. Instead, say these
stakeholders, we need more recovery-oriented mental health services that
recognize the individual with mental illness as the true expert on his or her
disorder. These stakeholders mention
consumer-run and peer support services as vital to recovery, but often
unavailable.
A mental health advocate writes:
The one
group of dedicated individuals who can educate clients about recovery and
empower them with hope is a group of consumers.
The leader of one such group
writes to the Commission:
I run a
support/activist peer-run group, and we are interested in working with
traditional models, but we are finding a lot of resistance. However, many of the people I work with have
found that they were only truly helped after they found a group like ours.
Correctional facilities are the
mental health hospitals of forty years ago," writes one stakeholder. According to the comments received, dozens
more stakeholders would seem to agree.
Yet treatment is seldom available to inmates with mental illness. Stakeholders give numerous accounts of
incarcerated persons clearly experiencing severe symptoms of mental illness,
but receiving no treatment while incarcerated.
One consumer writes:
I was told
I would have to wait until I got out to get treatment for my “problems;” I was
in prison “to be punished, not treated.
Individuals put on suicide watch
while incarcerated are treated particularly inhumanely, according to more than
one stakeholder, including this family member:
...if the
person is suicidal the treatment they receive in the jail facility is not
sympathetic to a person who wants to take their life. For example, many jail facilities will remove
the clothing and put the client in a padded cell all alone with just a camera
in the room.
More than a few consumers report
psychotropic medications were discontinued or denied while they were
incarcerated. Writes one mother of her
incarcerated daughter with mental illness:
...They
are denied their medication even when it is provided free to the county,
because I myself took it to the jail. It
cost them nothing yet they refuse to administer it properly. She gets a pill whenever they feel like
giving it to her. This is extremely
dangerous…
Some stakeholders would like to
see law enforcement officials trained on how to interact with persons with
mental illness without escalating an already-agitated individual. Others would like to see similar training for
judges and others in the judicial system, including juvenile justice.
Finally, according to a number of
stakeholders in many states, once consumers have a criminal record, upon
release they cannot access any public mental health or support services,
particularly subsidizing housing, making re-entry into the community
particularly harsh.
Family
members describe situations where they firmly believed their loved ones were
dangerous to themselves and/or to others, but the family members were unable to
get their loved ones the needed crisis services. Some family members and stakeholders describe
crisis services that were so brief--one to three days--that their loved one was
far from stabilized when released to the family member’s care. Other family members report only being able
to obtain crisis services once their family member actually attempted suicide
or was arrested. Consumers also wrote of
having to wait extended periods of time for crisis services while feeling
suicidal.
More than a few people tell the Commission of how they lost their loved one to suicide.
I am the mother of a child
who completed a suicide while on suicide watch on a Mental Health Unit in a
hospital. The safety precautions and
standards of care were grossly inadequate to provide the promised safety. My son, xxxx, aged nineteen, self admitted
after experiencing an undetermined psychosis that included auditory
hallucinations and suicidal ideation. We
were repeatedly assured of his safety...The "professionals" responded
to our queries regarding levels of safety with dismissive comments such as
"we are the professionals."
Our concerns were generated by the level of monitoring, the presence of
tearable sheets and other safety factors.
We were told to "leave it up to us, we know what we are
doing." On the evening of the third
day, xxxx took a sheet from his bed, went to the bathroom and completed his
suicide by hanging. ...What I have found in the time following xxxx's death is
that this issue of completed suicides while in hospital or other institutions
is prevalent and yet there are few efforts to hold systems accountable. There are nonexistent or inconsistent levels
of safety under such conditions throughout the nation.
Numerous stakeholders cite a dire need for substance
abuse services, particularly simultaneous
treatment of co-occurring mental illness and substance use disorders. Many stakeholders report difficulty in
accessing these services or long waiting lists.
One provider elaborates on this treatment need:
Dual diagnosis is one of the
most devastating problems that we have experienced today for both children and
adults. Many times we talk about
prevention, but nowadays we are avoiding the issue of treatment…All too often,
clients are moved around a system and told they must treat the mental illness
part before the substance abuse part can be treated and vice versa. In reality, both must be treated at the same
time.
Another mental health professional writes:
…Patients with dual
diagnoses are often neglected by all services.
Substance abuse professionals are not experienced with dealing with
mental illnesses; mental health professionals are not very comfortable or
knowledgeable with persons with substance abuse…
The relatively few comments received on services for older adults note the overall lack of mental health services for this population. As summed up by one stakeholder:
...Services to the geriatric
population have become lost in the shuffle.
Consumers in rural areas need and desire the same kinds of mental health services as do those in more populated areas, according to rural area stakeholders. But for consumers in rural areas, the lack of access to all types of mental health services is apparently more extreme.
One rural stakeholder explains:
Living in a rural area makes
receiving services difficult--if not impossible. We lack transportation services over county
lines. We lack choice or providers. Staff turnover in rural areas is high; people
leave to find better paying jobs in larger cities.
Other rural providers write:
The number one comment I
hear from our consumers is that being in a rural area, it is difficult to
travel to and from appointments for services.
In our rural area, our
nearest providers are approximately 45 miles away.
While the previous section addressed the types of
services that prove challenging to access, this section discusses the types of
systemic barriers that stakeholders believe limit access to care. Many stakeholders offer insightful comments
on this topic. Dozens of comments
reflect problems related to insurance coverage, managed care, and the cost of
services. Stakeholders express
frustration, for example, with not being able to access a desired service
because of the lack of mental health parity, or the limits imposed by managed
care utilization management.
Stakeholders also discuss barriers resulting from
inadequate numbers of qualified service providers, especially psychiatrists to
prescribe and monitor medications.
Cultural competence is a theme addressed in a limited number of
comments, but one that paints a compelling picture of the barriers faced by
those from different linguistic or cultural groups. In rural areas in particular, stakeholders
comment on the dearth of providers and the lack of transportation presenting a
barrier to service access. The following sections discuss each of these concerns
and others in more detail.
The comments present many different cost-related barriers to accessing treatment. Just looking at the topic of insurance coverage, care management, and costs, the list grows quite long, and includes:
·
Lack of parity for mental health service benefits;
·
Strict limits on authorized numbers of days or sessions of treatment;
·
Strict annual and lifetime limits on coverage;
·
High co-payments or other out-of-pocket expenses;
·
Provider drop out due to too low reimbursement rates;
·
Limited provider panels;
·
Invasive and time consuming service authorization processes;
·
Unskilled or insensitive service authorization personnel; and
·
The inability to purchase insurance coverage due to pre-existing
limits.
Consumers and families make a number of points about the lack of parity for mental health insurance and the problems it causes:
There is an overwhelming need for parity in insurance reimbursement for mental health services as compared to coverage for other health services. We are a middle income family with copay insurance through an employer but have had to spend many thousands of dollars of our own money in getting treatment and medication for our daughter. If another organ of her body, other than her brain, were malfunctioning, the coverage would be much better.
The biggest barrier I've had to deal with is my insurance company. . . . I have a good insurance plan when it comes to my regular doctor visits. However, my copay for a psychologist or psychiatrist is double the amount of when I see my family doctor (or any other specialist). This seems like discrimination to me.
Consumers and family members also express
frustration with the limited number of providers who are available to provide
services in their health plans:
The last hurdle I've faced is the small amount of psychiatrists that deal with insurance companies. . . . The psychiatrists who do accept insurance are so busy, it's nearly impossible to get an appointment with them.
We need more choices under our health care plans for specialists like a child psychiatrist who treats . . . our child. . . . It should not take six months to access help when your child is . . . depressed and causing complete chaos in the lives of all those around them. It is not OK for a child to not receive help because the waiting list is too long.
Another theme that appears often relates to the
limitations on mental health care benefits
and the consequent high out-of-pocket costs that consumers and families
then must pay:
I live in a state . . . with a parity law, yet still find my mental health managed-care provider . . . has continued to limit my access to care. . . . . How can I be expected to get well when I'm always worrying about access to care?
First of all, [the insurance company] limits the days that they will provide coverage (in my instance, 20 some days for a whole lifetime). And mental illness treatment is so expensive, it's almost impossible for the typical middle-class person . . . to pay for it out of their own pocket.
The cost of mental health care has also been a constant stress in my life. I have a good insurance policy but my benefits are limited to a preset number of visits . . . which are [soon] used. This leaves me with between $350 to $500 of unreimbursed mental health expenses a month.
Providers also stress that managed care has limited access to services for the people they serve:
Managed-care has decreased the amount of services available to the patient (i.e. decreased number of sessions, decreased amount of care, limits to practitioners) and demanded more of the practitioner (i.e. paperwork and disclosed personal information about the client). These practices are detrimental both to the practitioner and to the client.
. . . many times, managed-care has made it impossible for clients to receive the care that they need because of undue restrictions on their care.
Providers also expressed frustration with the low reimbursement levels available from insurers and managed-care organizations, a perception received sympathetically by at least some families and consumers:
Managed-care has taken the most poorly reimbursed field of health care and made reimbursement so limited that providers are quitting in droves or not accepting insurance from managed care companies. Something must be done to create parity across the board on a national level with better reimbursement to the provider, to afford providers with a living wage.
. . . the reimbursement insurance companies give to psychiatrists is ridiculously low . . . I don't see how [my son’s psychiatrist] could make a living on what they want to pay him, and don't blame the doctor for dropping out of the plans.
Many of those with limited family resources and without insurance have even more serious challenges to face:
The main barrier I face at this time is my inability to obtain health insurance. I was originally carried on my husband's policy, but when he changed companies.....everyone in the family EXCEPT me was picked up for coverage. I have yet to find a company who will cover me independently. . . . I find it very frustrating that . . . I am now sometimes non-compliant with my medication for financial reasons.
Those who are indigent and theoretically eligible for publicly funded mental health benefits face a different but equally difficult set of problems. They may have to establish eligibility for Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) in order to receive a very modest monthly income support and become eligible for Medicaid or Medicare. As a practical matter, the entry barriers for these programs are hard for many consumers to surmount without assistance, according to many stakeholders. Becoming eligible for SSI, for example, may take many months and sometimes requires appeals.
Noting the complexities of negotiating her mental health center’s paperwork, a counselor observes that gaining SSI benefits is much tougher still:
I believe, however, that the process of receiving services from a mental health center is simple compared to applying for state benefits or SSI/SSDI. Both of these processes are very challenging and often that is an area that we can assist persons with.
Several comments from providers address the impact of historical and recent state budget cuts on the availability of mental health services, as illustrated in this statement from a community case manager:
Our target population is the severely mentally ill and those with no income. Our state is in a crisis situation with hiring freezes, budget cuts, and staff are not being replaced to work with the consumers that need help. We don't feel like we can do our jobs well and take care of our consumers spread too thin.
Access to care for patients experiencing significant crisis (requiring hospitalization) is disappearing to those without resources. In SC, the state has closed acute inpatient beds due to budget cuts and clients needing inpatient care now wait for days in emergency rooms. . . . Our local mental health center (also state operated) is trying to help and around the state local communities are coming up with some solutions, but it's all patchwork to off-set the lack of inpatient capacity. This problem is not limited to SC—through my professional associations I've heard of similar problems nation-wide.
Another provider comments on the impact of these budget reductions on people with serious mental illness:
Prior to recent state budget cuts this year our mental health agency was the safety net for the uninsured. However, now people can have access to our services only [if they have Medicaid or are in an urgent crisis]. If someone . . . does not have insurance . . . they are unable to afford their medications. . . . Once these medications run out his/her symptoms again exacerbate and the revolving door begins.
Stakeholders also cite a wide range of reasons for current and sometimes growing shortages of essential services and service providers that are less directly related to cost. Services frequently mentioned include psychiatrist visits, inpatient hospital beds, ACT teams, and case managers, among others.
For example, a stakeholder in
A perhaps
unintended consequence of
the Olmstead decision has
been that it was used in
· More severely ill children/adolescents sent out of state due to lack of local resources, cutting them off from family support;
· More suicides in jails as severely mentally ill inmates wait for beds to open up at state hospitals; and
· More patients released far too quickly from the hospital, or never sent there when they need that level treatment, resulting in more severely mentally ill homeless or recycling repeatedly through emergency rooms.
A nurse in
Our unit recently closed its doors with only a 30-day notice. No consideration was taken in advance on what to do with the community’s mentally ill. . . . Law enforcement has been inundated with calls for help and no where to take these people due to lack of services. Some are being housed in the jail and law enforcement agrees that this is not appropriate. The impact of this on our community will be enormous. These people are a part of our community and it is our obligation to see that they get the help they need and deserve.
Another comment notes the limited number of treatment professionals and hospital beds:
The only barriers I see is that there is not enough mental health professionals to treat clients! . . . We need to do more in getting more hospitals open and more staff that fit the needs of our clients!
A mental health consumer in
There
is a lack of mental health services in the community that are voluntary, friendly, competent and accessible. A number of years ago I was on the streets delusional and hearing
voices for nine
months in xxxx,
Another frequently recurring theme in the comments is that the absence of transportation presents a barrier to the receipt of services, particularly in more rural areas.
There is no centralized, consistent method for
accessing mental health services. For
children, there is no system. Therefore,
people do not know who to call or where to call. MH services are not accessible to many
because
The closest state mental-health clinic around here is 60 miles away. When you get there you have either two minutes with a very busy psychiatrist or 15 minutes with a cold, uncaring social worker. The only topic of discussion is the medication you are on. There is no psychotherapy offered for depression, anxiety, or PTSD. There is public transportation available if you are on disability or Medicaid. There needs to be help available in every little town in this country for mental illness, just like there are for other kinds of illnesses. If our local 26 bed hospital can get a CT scanner, then why not a psychiatrist?
Some consumer comments indicate that the coercive
nature of the service delivery system is a major barrier to accessing services:
Access is limited by cost, numbers of programs, and, in some cases that I have witnessed, the extremely coercive (and potentially violent) nature of the services which people quite reasonably avoid for fear of entrapment in a system that will keep and/or harm them. . . . In my mind, access is a secondary issue until involuntary treatment is eliminated.
Another consumer describes how coercive treatment
adversely effected his self-respect and willingness to accept further treatment
services:
When I first entered the mental health system in an acute state of panic and anxiousness, highly agitated, very severely depressed & extremely suicidal, I was treated with care, concern, validation and respect by the person who did the in-take and whom later became my first case-manager. . . . That would not prove to be the case however with any other mental care provider I engaged in services with since. . . . The later use of coercion and outright force was to be the most severe and persistent causation for my having a lack of access to needed services and supports. . . . It was such re-traumatizing and stressful experiences which brought harm to and therefore caused a serious hampering of what quality of life I may have still had or ever hoped to regain. . . . Such experiences dug away at what little dignity, pride, self-respect and self-worth I once held. . . . Coercive and forced treatment, as well as psychiatric incarceration, in any form are major and significant barriers to true informed consent, choice and treatment of any form of health care which may have a chance to improve or enhance the quality of life for an individual who may seek it.
Also common are comments from family members or
service providers who feel that the current civil commitment statutes prevent
people with mental illness from receiving the services they need:
Involuntary commitment laws must be more broadly interpreted so that those who are unaware of their illness can be brought into care. Here, access to services is denied because people "choose" not to receive it. The "system" has been hiding behind this preposterous notion of "choice" too long. Mental illness can destroy a person's ability to make appropriate choices for their own care.
Stakeholders mention the unavailability of
culturally competent services and service providers in a number of
comments. A mental health professional writes:
Minority
populations continue to face significant barriers to mental health care. Language continues to make mental health
services inaccessible to large numbers of people. One reason for this is lack of qualified
mental health providers who speak languages other than English. Even in xxxx, [
I believe that the most significant contributors to this issue is the high cost of education, the lack of adequate reimbursement when serving minority and underprivileged communities, and the lack of incentive to become a mental health professional. Doctors, lawyers, and teachers are all eligible for large reductions in their student loans if they serve underprivileged populations-not so with mental health providers. If we valued mental health as we valued medicine and teaching, we would offer incentives, such as loan forgiveness, to individuals willing to go to school and return to serve their communities.
Another provider offers an example of the sort of misunderstanding that can arise when someone is unfamiliar with the customs and norms of a particular culture:
…I
have had Hispanic clients, in my office, make a call to the Hispanic intake and
had the intake person ask what the problem
is.
The absence of culturally competent service
providers is also a problem for people who are deaf or who have hearing
impairments. An
advocate writes:
…From
referral to actual intake has taken, in some cases, up to a full school year
because the MH system is not prepared to work with or deal with deaf and hard
of hearing individuals. In addition,
these individuals are often placed in day
treatment or group settings where there are no sign language interpreters,
assistive listening devices or other assistive technology made available. There is little to be gained from the "group"
experience if you cannot even communicate with your peers.
Stakeholders often note that coordination represents
a major issue within mental health treatment as well as between mental health
and support services, e.g., the physician prescribing psychotropic medication
did not coordinate with the outpatient counselor. Stakeholders also mention the influence of
separate funding streams, which discourage coordination of care. However, stakeholders most often discuss the
lack of coordination of mental health and support services in terms of limited access to desired services, so
that the problem is not just that services are not coordinated, but that the
services often aren’t received at all.
The preponderance of comments on coordination of
services indicates that the array of services that should be accessible and
coordinated is absent. Many write the
Commission that the point of contact within the treatment system fails to offer
the type and frequency of services which consumers and their families are
looking for. The remainder of this
section discusses stakeholders' most frequent comments on particular types of
coordination within and between mental health services and support services.
According to dozens of stakeholders' comments, the
mental health "continuum of care" represents an illusive ideal, not
the reality of our current mental health care system. Across all affiliations, stakeholders say the
mental health system of care is comprised of discrete services, none
communicating with the other, with the existence of support services only
sometimes revealed to those most in need of them.
Dozens of consumers and family members write about
how hard it is to find desperately needed support services, particularly while
one is struggling with the symptoms of a serious mental illness. This
consumer's comment reflects the thoughts of many others:
I have found that little coordination exists. I have had to be proactive in finding the resources available to me. I was never made aware of vocational rehabilitation services, or aware of drug company-sponsored indigent care for medications. I had to search these things out myself, which was extremely difficult to do in the worst episodes of my illness. My ability to concentrate was so diminished that I think I missed many opportunities that could have helped me to be successful.
Another consumer describes a hodgepodge of services that the consumer is left to navigate alone, when what the consumer really needs is something else entirely:
There is very little integration between programs. Rather, we as consumers are shifted from one program to another with little continuity. Start at the emergency room to calm down from an acute episode; shifted to an inpatient wing or state hospital; released to a day treatment program; learn skills like pottery and painting and then be released to one's family or the streets or the prison system. Then the consumer is expected to find his way into job training or educational programs without a single case manager supervising his progress. What each consumer needs is a single social worker/case manager monitoring one's progress through the system, making sure that a consumer is treated with dignity, offered the best practices available, guided through rehabilitative/recovery services, helped into community based mental healthcare and/or housing, guaranteed supportive psychotherapy and medication management, and employment placement so one can thrive over the long-term.
A parent describes the poorly coordinated services her daughter received:
My daughter has been hospitalized 17 times since her diagnosis for bipolar illness … Although our county mental health system is supposed to provide a caseworker, and timely visits with a physician so that she can maintain her health, this has not happened. I see little coordination between her physician, social worker, and the “team” that she is supposed to have access to. The latest failure in services is that my daughter has not had a regular check-up with her mental health physician for 8 months. If it were not for the support from her general practitioner, my daughter would not have survived this system. Lack of funding and poor management put too many people like my daughter at risk. This is inexcusable and unacceptable.
A provider describes the lack of information sharing among service components that she has experienced:
When clients are treated at either State facilities, local hospitals, or the ER, information regarding any change in treatments is not communicated to the provider that routinely cares for the clients. Treating facilities should be mandated to communicate with the provider that will be caring for the client once they leave the facility. Far, far too often I have received a client after a hospitalization with no information as to what tests have been completed, or what changes in medication have occurred. I may repeat test, an added cost to the system.
Finally, one consumer sums up the sentiments of many
stakeholders:
The connection between mental health, substance abuse, homelessness, and criminal justice must be fully explored and dealt with across systems. A large percentage of people who are chemically dependent, homeless, or in prison have, a mental health diagnosis.
The same types of coordination and continuum of care
problems noted in the previous section exist for children as well, but also
extend into the education arena, according to numerous stakeholders. Because of children's multiple developmental
needs, multiple agencies are often involved, complicating the coordination of
services even further.
A parent writes:
There has been very little coordination of services provided with our children’s services. We have searched for five years to find respite providers…We have attempted to find a competent therapist with knowledge of adoption and significant emotional challenges and still continue to search.
Another provider addresses the disjoint between adult and child mental health services and the lack of coordinated family services:
I have worked in child mental health services for 35 years as a clinical social worker. I find an appalling lack of coordination between the adult mental health providers and the child providers…There seems to be little acknowledgement that many of the parents whose children are in the “system” also have a mental illness…In spite of two systems which provide case management for the child and the adult, there is no system which really addresses family issues…The child system continues to expend large sums of money on the child without ever addressing the issues parents with mental illness bring to the situation.
Stakeholders of all affiliations frequently note the
lack of coordination between drug and alcohol and mental health services. Many also point out that in most States
separate funding streams fund mental health and substance use treatments. Consequently, they are typically administered
in two entirely separate systems, making coordination at the individual
consumer level unlikely.
A mental health professional writes:
…There is a definite lack of coordination of mental health and support services for the dual diagnosis population…Some agencies follow an abstinence only philosophy, and refuse to treat clients who are actively using. As a result, many people in desperate need of services are turned away and do not know where to go for help.
An advocate agrees:
There is a huge gap in care for dual-diagnosed clients, since hospitals won’t take a substance abuser, and treatment centers won’t take someone who needs psychiatric medications.
Individuals with a mental illness and co-occurring substance-use
disorder report seldom receiving treatment for both disorders simultaneously,
even when the treating clinician is clearly aware of their substance-use
disorder. In fact, substance use
treatment is entirely inaccessible, according to a number of stakeholders. Not surprisingly, a few consumers write the
Commission that integrated treatment for co-occurring disorders, considered an
evidence-based practice for adults with serious mental illness, is unavailable.
Further compounding this service coordination
problem, individuals with co-occurring disorders often find access to other
support services limited, as this provider describes:
Often the clients that have the greatest difficulty are those individuals that experience mental illness and addictions. Their relapses preclude them from participating in a number of housing options and they are often punished by having housing programs denied to them simply because they have trouble staying clean and sober. Unfortunately, relapse is an inherent part of the disease of addiction and these individuals need to be supported even if it requires “wet” housing alternatives.
Many family members of
individuals with serious mental illness want to be allies in their loved ones’
treatment, but find themselves left out and uninformed of treatment plans and
progress. Family members report this
occurs even when they are the primary caretakers for their loved one with
mental illness.
One family member writes:
When my son first became ill [at age 17 years] we were totally adrift…help from the “system” was very difficult to obtain. He was unable to remember appointments. Confidentiality was given as the reason we, as his parents, could not be advised of date and time of appointments. Therefore, he did not receive needed help. He was hospitalized nine times the first year of his illness. Each time he missed an appointment our insurance company was billed…It was totally absurd—not cost-effective or treatment-effective.
Another frustrated family member describes how the system’s lack of information sharing with the family may have impeded treatment for their daughter:
For example, in the six years she was being treated for her bipolar illness at the county mental health department, no one ever informed our family, in spite of my daughter having given full disclosure instructions for our inclusion in her treatment plan, of her “dual diagnosis.” When this fact was finally revealed, she made plans to enter into a local outpatient program designed for dual diagnosis patients and her recovery began in earnest and she has progressed exponentially since that revelation. It is inexcusable that she should waste several years of her life to an illness that is so treatable and through so much delay and misinformation, especially when she has an educated and supportive family to help her.
The
There is very little coordination between hospitals and local agency. Once, even though we were dealing with a private hospital and my son had insurance, the hospital released him without notifying us. If he had not had a quarter in his pocket to make a collect call, he would have been on the streets. His father went to bring him home while I stayed on the phone telling him “please stay there, don't leave”…
A number of stakeholders observe the separation of
mental health care from other health care services and the problems this
separation causes.
This provider’s comments on this topic are typical:
There is a huge and artificial disconnect between the mental health system and the clinical medical system. In the end, this disconnect creates much more cost, and is a major disservice to patients.
A family member writes:
The practice of separating mental health care from other health care results in problems getting blood work, EKGs, and other tests…ordered by the psychiatrist in order to monitor medication side effects.
Some stakeholders decry the larger medical establishment’s lack of awareness of mental disorders. Writes one consumer:
…Physicians should be more aware and educated on mental disorders…I was misdiagnosed as having a possible thyroid cancer and had to undergo expensive e-rays and a biopsy only to tell me that there was nothing wrong with me. I took several trips to several different doctors to finally come to the correct conclusion that I suffer from panic disorder.
Noting that people with mental illness generally
have poor physical health, one provider suggests that mental health providers
need to pay more attention to their clients’ physical health needs. Conversely, a number of primary care
physicians, particularly in rural areas, report that they frequently have
responsibility for identifying and treating their patients’ mental disorders,
as specialty mental health providers are seldom unavailable in rural
areas.
One family physician reports,
In rural settings, there are not enough psychiatrists available to treat patients…As a family physician, I treat successfully all age groups of mental illness. Compensation for treatment and evaluation for my patients with mental illness is often not paid because I am not considered a “mental health provider.” Who else will provide this care for these patients?
Primary care physicians also treat persons with mental illness in more populated areas. According to one family physician:
Many patients with mental illness go to their regular medical doctors for treatment due to stigma of the diagnosis, unavailability of psychologists or psychiatrists, and limited mental health benefits by third-party payers.
For all stakeholders, the issue of stigma emerges as central to the discussion of consumers’ participation in community life. Consumers fear disclosure of their mental illness will effect their employment, access to health insurance, friendships and daily activities. Many consumers and family members give examples of the negative impact of disclosure of mental illness. Numerous comments underscore the need for training and education of employers, consumers, and community members to end the stigma associated with mental illness and reduce barriers to participation in community life.
A parent from
When I recently told someone a family member had cancer, I was embraced. When I tell people that my mother had diabetes and lost both her legs, they are sympathetic. When I tell someone my daughter has mental illness, I feel an immediate withdrawal. No embrace, no sympathy - but fear. People do not want to be around mental illness. … Our loved ones did not choose to have this illness. Who would? But they are not monsters. They are beautiful, loving and precious people who are suffering not only physically and mentally.
Consumers also give eloquent testimony to the anguish they suffer in not being able to participate fully in a “normal” community existence. Their comments reflect the daily discrimination they are subject to, from employers, co-workers, teachers, neighbors and law enforcement officials who do not understand and are not sympathetic to their illness or that of a family member.
A family member from
My 15-year old son was diagnosed with bipolar approximately one year ago. This came after my husband was also diagnosed after he had a manic episode, which resulted in the loss of his job of 23 years, and a felony conviction … It is extremely difficult for him to participate in the everyday activities of life… It is extremely difficult for him to find employment, and he has been unable to do so for over a year. The stigma attached to mental illness is overwhelming. We have been looked down upon in our community, and there is a lack of understanding within our community. Our children have suffered at school, and many of their friends have been told to ‘stay away from them.’ My son, who was a school wrestler, had to leave the team after his teammates would no longer practice with him. We were always very active in our community but no longer participate in any community activities, as people turn away from us. My children are not allowed to play in our community sport teams, as the perception is no other children would want to play with them, they would not be able to place them on a team … I see no light at the end of the tunnel.
Lack of the support services that would make participating in the community possible is noted by many, especially the need for job training and access to employment. Numerous stakeholders describe how insufficient SSI or disability payments are in meeting one’s living expenses, particularly when coupled with the high price of medication. Furthermore, they note, conflicting regulations make it difficult to work without losing necessary health benefits, especially coverage for treatment and medication. Stakeholders also cite support for independent living and structured rehabilitative care that teaches daily living skills as insufficient or missing support services.
One
consumer writes:
A key barrier [to full
community participation] is lack of basic human needs being met, such as decent
jobs at decent pay, decent housing…We need more housing, not just more Haldol.
Many, many stakeholders tell of consumers’ desire to
work in a job, but the seemingly insurmountable barriers that stand in the
way. These barriers include finding a
job, despite sometimes lengthy periods of unemployment; finding a sympathetic
employer who will hire someone with a mental illness; the risk of losing
medical and drug coverage; and employers’ unwillingness to provide
accommodations such as flexible schedules or time off when needed. Yet, without a paying job and the social
status, financial rewards, and meaning contribution to society that work
entails, there is limited opportunity for full participation in community life.
As one consumer tells the Commission,
“Work is the ‘sine qua non’ of life.”
One advocate sums up the comments of many:
…Everyone wants a valued
place; jobs, contributing to community, is part of that valued place.
Stigma and employment discrimination against persons with mental illness was mentioned by many as a major barrier to employment. This consumer’s comment reflects the thoughts of many others:
We are just not there yet. Employers don’t want mentally ill people to work for them. The news on TV, Radio, and in the newspaper, only talk about the people who have committed a crime, usually a murder.
Many consumers write that the current disability benefit structure has built in disincentives that discourage attempts to seek employment. One frustrated family member describes this dilemma:
If the individual goes back
to work, even low-paying job or part-time, he or she jeopardizes their
coverage. They can’t risk losing the
medical and drug coverage!!! What they
supposed to do? You want them to recover
and become a productive member of society.
But individuals with mental illness have relapses, etc. They require constant medical care with
access to the necessary drugs to maintain normalcy.
Numerous consumers decry the poor quality of the vocational rehabilitation services they have received:
I am unemployed and voc rehab, the three times I tried going through them, was about the biggest joke around. I was placed in made up nonexistent jobs, like a receptionist at the county museum, a place that got really no visitors, maybe one a week. I just sat basically. And then there would be, every month, a meeting with caseworker, boss, skills trainer, to discuss how I was doing at this farce of a job. Huge waste of money and did nothing for me.
This consumer suggests that many persons with mental illness could work if afforded an appropriately flexible work schedule:
The most serious issue, I believe, is the assumption on the part of employers and disability programs that persons are either “fully functional” or “totally and permanently disabled.” This kind of dualistic thinking substantially reduces the potential productivity of the population of persons with mental illness…I have bipolar disorder. I am able to work 40 hours a week, but it’s not a consistent 40 hours. Some days it’s 9-5, some days 10-8, some days just a few hours, some days not at all. When I’m experiencing a mild manic episode, my productivity is very high. When I’m depressed, it’s low…I have an IQ of 140, yet the work world doesn’t value intelligence or productivity, it values attendance. I have the ability to do many jobs, but the hours must flex for me to handle them.
Like this consumer in
The worst by far is that the mentally ill that are on Disability are doomed to live in poverty or accept low paying part-time jobs because of policies that discourage saving or earning enough money for a livable wage.
Everyone needs affordable, safe housing, and persons with mental illness are no exception. Yet, such housing—or even any housing at all—is typically very difficult to come by, according to many stakeholders. Some stakeholders cite subsidized housing waiting lists of two years or more. The lack of transitional housing causes many consumers to end up on the streets when discharged from the hospital because they have nowhere else to go. Consumers without a decent place to live in the community cannot be said to be “participating fully in community life.”
Mental health professionals write:
It appears to me that the problem with current system is that there are people who can no longer stay in the mental institutions but there is no where else for them to live. I work in the residential care area for people with mental disabilities. I am faced everyday with the issue of someone needing a place to live but having no way at all to pay for it themselves.
There is not enough 24-hour supervised transitional housing for psychiatric consumers. The waiting lists for this type of housing are two or more years long. This shortage of housing leads to hospital overcrowding and homelessness. There is resistance from most towns when a group home needs to be opened, which hampers efforts to create more housing even when funding is available.
People with serious mental
illness need HOUSING and better income supports to live in our communities.
A consumer describes the lack of preference consumers are afforded in choosing their housing:
For the most part, housing services are not “real world” services. In other words, consumers are given a roommate that’s not of their choice, or they’re not allowed to have a television, etc. In the real world, people know the rules because they are in the form of a lease. In the real world, people choose either to have a roommate or not, or choose to live alone.
Failures in our system of
community mental health care have led to the tragic overuse of the criminal
justice system and the jails to address the problems of people with mental
illnesses who are homeless or in crisis.
A stakeholder from
Few will argue that jails
and prisons have become the mental hospitals of 40 years ago. Statistics abound on the percent of inmates
who have a concurrent mental health and/or substance abuse diagnosis.
Another stakeholder outlines the process that leads consumers of mental health services to end up in jail:
There is very little
coordination of mental health services . . . and reduced resources . . . and
attempts to "dump" indigent patients across systems. . . . The mental health patient often has no
clear pathway of care from crisis intervention, to in-patient stabilization, to
out-patient followup with adequate social and vocational rehabilitation
services. Adequate housing is often hard
to find for the indigent patient who often is referred to temporary shelters. As psychiatric in-patient beds have been
eliminated, jails have increasingly become housing for the behaviorally
disturbed patients and often, psychotropic medications are discontinued with
incarceration with little or no coordination with providers of medical care.
The parent of a
I have a 28 yr. old son who
has Bipolar. For 10 years I have tried
to get him help. There was either a long waiting list (years), he wasn't severe
enough, he was too severe, he was too poor or wasn't poor enough to qualify for
programs. . . . Sadly enough, it was not until he was put in jail (on made up
charges, because at the time law officers did not want the paper work or hassle
of getting a mental health warrant, it was easier to take them to jail.) that
he got into the Mental Health Mental Retardation services. . . . I have talked
to numerous law officers confidentially over the past years and they all admit
that it was easier to arrest the mentally ill on charges such as resisting an
arrest, attempting to disarm a peace officer, public disturbance, etc, etc,
instead of having to spend up to approx. 8 hours getting a mental health
warrant/ sit at a hospital psychiatric unit. . . . Now this adds to the . . .
problems [of the person with mental illness], NOW he has a criminal record for
something he didn't even do!!
The theme of jailing leading
to loss of psychotropic medications, often followed by a downward spiral of
dysfunction is one that appears time after time in the public comments. A
I have been in treatment for
a comorbid panic disorder, depression, and resulting use of alcohol. Due to my mental illness, I came into contact
with the criminal justice system. Much
to my dismay, they have no knowledge of how to recognize a person who is
mentally ill. Incarceration, and lack of
access to my medications were the result. . . . Those needing the help, and
understanding for their disorders, are put in jail instead. Then railroaded through the court system as
criminals. Released onto the streets, with little or no help, to repeat the
circle, ending back in jail, or worse.
Similarly, a
At times these individuals
wind up in jail for behaviors due to their illness, i.e. abuse or neglect of
their medication. . . .I am not proposing that there should not be any
punishment for the crimes they may have committed but have a real problem with
how they are treated here in the jail.
My specific complaint is that they are denied their medication even when
it is provided free to the county . . . She gets a pill whenever they feel like
giving it to her. This is extremely
dangerous because there are serious reactions because of it. . . . My daughter
is not the only mentally ill person being treated this way. WHAT CAN I DO? PLEASE HELP ME!
Those attempting to provide mental health services in the jail setting also express frustration with the quality of services and the inadequacy of resources:
I am a Psychiatric Social
Worker providing mental health services to inmates . . . incarcerated in our
county jail. This is an area which is
poorly funded and poorly staffed. This
in turn limits the types of mental health services which we can provide to the
inmates. . . . The SMI (seriously mentally ill) population is very underserved
and lack coordinated care with the community mental resources. The population with addiction issues and the
Dual Diagnosed population are also very underserved. . . . These areas need to
be reviewed and properly funded for adequate staffing and adequate
programs/resources/services.
A provider from
In my fifteen years in
working in mental health services both in and out of the criminal justice
setting, the most glaring problem was the shifting of the burden of mental
health services from community based MHMR to the criminal justice
settings. Jails, prisons and probation
offices were the recipients of more and more people suffering from more and
more severe mental illnesses and had no mechanism for referral. . . . Once
someone enters the criminal justice arena, not only are their opportunities for
treatment limited but once marked as a criminal, [they] can actually no longer
receive some services.
Comments from two other stakeholders point out the social and financial costs associated with the jailing of people with serious mental illness:
The costs of not treating
our most vulnerable citizens is rising. The cost is reflected in the growing
ranks of homeless, the Los Angeles County Jail is now the largest Mental Health
Facility in the world. The cost of
incarcerating a person with mental illness is far greater than the cost of
treatment.
Would we put individual's
with some other physical disease in jail for treatment? We do so in our county with our
children/juveniles, it is one of our Nation's biggest tragedies. This is of course how we handle the majority
of the Mentally Ill adults as well. Our
jails cost us money to run; it is far . . . cheaper to our society if we do not
use these institutions as Mental Health wards, not to say the humane aspects of
this . . .
Thoughtful comments from a
range of stakeholders also point to solutions to the problem, in the form of
education, diversion programs, better treatment in jail and prison settings,
and better community services to lessen the likelihood of criminal justice
involvement. The first comment is from a
parent in
Jails and prisons are a most
expensive and usually unproductive path for the mentally ill. The mentally ill
who commit crimes should definitely have consequences, including serving time,
and they should have medical help for their brain disorders. I don't think most judges, DA's, or lawyers
understand much about mental illnesses as I heard many inappropriate,
prejudiced, and uneducated comments from them during our son's trial. Judges are certainly not doing anything about
providing help for the 17% of the prison/jail population that has mental
illnesses. We definitely need to help
the judicial system help the mentally ill.
It's not their fault they don't understand; they simply need help in
understanding. There are some good
programs out there doing just that, and the federal government should be doing
all it can to get these programs established through the
A nurse and mother of a son with bipolar illness also recommends educational programs:
This topic is [of]
particular interest to me as a parent of a 28 year old son who is Bipolar and
has been receiving meds and treatment for the last eight years. He had completed
A member of NAMI from
I was also an approved
police trainer on mental health issues.
But how can we expect our officer to transport a sick person for 2 hours
one way to the closest Psychiatric unit and than have to come back to go to
court and testify to have the person involuntarily committed. Time restraints
make it easier to bring the person with mental illness to jail. . . . In jail
all should have access to medication and medical services. It is inhumane to have a sick person in
confinement for months, some with no bedding or clothing especially as it is
the illness that brings them to jail.
Confinement causes more severe illness that takes a long time to heal,
if at all.
Three other stakeholders provide interesting suggestions of their own:
I observe that we need
Mental Health professionals and Local Police and Sheriff along with Judges and
Lawyers to be more informed of each others responsibilities. They need to network more and keep each
department aware of the needs of the Mental Health Client and the different
treatment options which may be available in a particular County or City.
There is a need for
discharge planning from the hospitals and the jails. People are treated and released into the
community, with no one helping them find where they are supposed to go to
continue their treatment, causing them to become ill all over again.
What is needed to save
monies in Mental Health Reform is mandatory "Crisis Units" in all
Counties of all states and a P.A.C.T. Team type approach on after care to help
keep the mentally ill well and in society.
The other side of this story is the 30% or more of the people in jail
who should be in some sort of Mental rehabilitation program. . . . One less
Jail per county built and one Crisis Unit built with a drop-in clinic in its
place would be an answer that would give these Mentally Ill Americans a real
chance for help and happiness.
Despite all the barriers to
recovery and community participation, a number of stakeholders tell the
Commission about some successes. A
parent recounts her daughter’s successful recovery, which she attributes to
effective treatment, particularly finding the psychotropic right medication,
and supported employment:
First, a
success story. My daughter, who is 22
and suffers from severe bipolar disorder, was repeatedly hospitalized during
adolescence. Gradually, the best
medications for her were identified, and through quality doctors and therapists
she learned to recognize and manage her systems. Now she is attending school and working
full-time … It was very difficult for
her to move into ‘participating fully in her community’ until we FINALLY found
the right medications to manage her most severe systems, so I am convinced this
is the essential first step for many individuals with severe illnesses. Second, I cannot emphasize enough how
important the ability to work in a real job has been to her self-esteem and
therefore to her continued stability. In
our state, the absence of adequate basic services, especially timely and
comprehensive services for individuals suffering a relapse/crisis, means that
many individuals are unable to stabilize sufficiently to make the next steps
toward participating fully in the community.
This consumer expresses
hopefulness that people with serious mental illness can recover, but cites many
system-level barriers that stand in the way:
I believe the “system”
failed me the most as I attempted to achieve my bachelors degree. There were
not enough support services available, thus it took me eighteen years to
finally achieve that goal. Paying for
medications, too, is a very difficult task.
I hope the Commission will truly address the issues of discrimination,
lack of adequate funding for community services, lack of insurance equity, and
the issues of supported housing, education and employment. People with SMI can
and do recover given the opportunity. Most people don't know that as a truth.
The mother of a young adult with bipolar disorder describes her daughter’s fragmented mental health treatment and lapses when no mental health clinician was available to see her daughter for months at a time, and writes of her daughter’s recovery:
In spite of the problems … all of them due to lack of service by the mental health department in this county, my daughter has regained her health to the extent that she is enrolled in the Community College and has resumed the college career that was interrupted by bipolar illness … I have only to look at my daughter to see what a valuable contribution she will one day make to society as an art teacher for the primary grades, and think of what a loss this will be if she cannot maintain her mental health because she can't see her doctor when she is ill.
Unfortunately, a number of stakeholders’ comments on this topic are similar to that of this family member’s:
I cannot comment on good programs and/or model programs because I am unaware of them…
When stakeholders do cite particular programs, they most often mention the following types of programs as effective interventions that improve consumers’ experience of care:
· Ongoing Medication management
· Supported employment
· Housing support
· Programs for Assertive Community Treatment (PACT)
· Integrated treatment for co-occurring substance abuse and mental illness disorders
· Consumer-run and peer-support services
Stakeholders’ desires for these types of services, and the barriers that inhibit accessing them have already been addressed previously in this report:
The P/ACT Model, as tested so far in this state, is also extremely cost-effective, as well as being a preferred practice by those who are being treated. Much less frightening than being psychotic among strangers, in a strange, locked environment, cut off from everything and everyone warmly familiar.
Rural providers, like this one, note that PACT/ACT programs may not be feasible in rural areas, but the program’s key components can be adapted for rural areas:
I do believe PACT teams are a very valuable service, but not cost-effective for many rural areas. PACT principles can be incorporated into a case management program that works with a wide range of consumers instead of limiting themselves to the most seriously mentally ill, treatment-resistant clients.
A provider describes a program to treat co-occurring mental illness and substance abuse disorders:
In 1997,
Community Mental Health joined up with the
PUBLIC COMMENT CODING
METHODOLOGY
The public was invited to submit comments to the President's New Freedom Commission on Mental Health via the Commission’s Public Comment web site at http://www.mentalhealthcommission.gov.
The public comments submitted
to the Commission Web Site were imported into an ACCESS database for
coding. The Commission also received a
small number of comments through the
Trained staff reviewed each comment and coded its content according to a pre-determined coding scheme. The coding scheme consists of 25 categories. Fifteen of the categories represent the Commission’s Subcommittee areas, while the remaining ten categories represent broad themes, cutting across Subcommittee areas, that appeared frequently in the public comments. The coding categories and their descriptions are shown in the Appendix. Westat staff first compared coding results among all coders to ensure that coding was conducted reliably and consistently across coders. The coded comments, sorted into the 25 categories, serve as the basis for this Report.
APPENDIX
Coding Categories for NFC Public Comments
Group |
Category |
Definition |
Age |
Children |
Relating to MH problems or treatment for children 21 years of age or younger |
Older Adults |
Relating to MH problems or treatment for persons age 60 years or older |
|
Special Populations |
Consumer Issues |
Related to recovery; empowerment; consumer self-determination; consumer demands, rights, or needs; or survivor issues of persons with MI |
Criminal Justice |
Relating to involvement of a person with MI with the criminal justice system, e.g., police, courts, jails, prisons, or any specific legal issues |
|
Families |
Any discussion of family, impact on family members or a member’s mental illness |
|
Homeless |
Relating to homelessness or housing issues for persons with MI |
|
Rural |
Relating to MH problems or treatment for persons living in rural areas |
|
Services |
Co-Occurring Disorders |
Related to having both a MI and substance use disorder or co-occurring treatment |
Employment & Income Support |
Related to getting, keeping, or losing a job; vocational rehab, supported employment, or jobs programs; or income supports, e.g., SSI, SSDI, or others |
|
Evidence Based Practices |
Related to evidence-based practices for MI, model programs, or best or promising practices |
|
Housing |
Related to access to affordable housing, lack of housing, or loss of housing |
|
Medicaid and Medicare |
Mention of terms “Medicaid,” “Medicare,” “SSI,” or “SSDI” |
|
MH Interface with General Medicine |
Involving having a MI or receiving MH treatment and general medical problems or general medical treatment |
|
Medication Issues |
Relating to medications for MI or other medications that affect MH, and interactions. |
|
Suicide Prevention |
Relating to suicide, attempted suicide, suicidal ideation, or suicide prevention |
|
Access |
Coordination of Services |
Relating to coordination of different services such as CM, SA, & MH, or within MH continuum. |
Rights and Engagement |
Relating to legal rights of persons with MI and their engagement in MH services |
|
Cultural Competence |
Relating to cultural aspects of MI and treatment, e.g., cultural, race, ethnicity, gender, age, sexual orientation, and other aspects of culture |
|
Financing/Reimbursement |
Relating to the cost of care, insurance coverage, co-payments, limitations on what is available due to state, federal or insurers financing regulations, and lack of financing/reimbursement |
|
Hospital |
Specifically relating to care in a hospital setting |
|
Policy/Regulations |
State or federal level rule, policy, procedure, regulation or pending legislation relating to MH coverage |
|
Managed Care |
Anything relating to managed care |
|
Parity |
Relating to equitable coverage of mental health parity and physical health disorders. |
|
Restriction or Lack of Services |
Blocked access to services due to restrictions such as entry criteria or insurance coverage, absence of services in an area, being provided the incorrect services for a particular issue, and not being directed toward appropriate care by professionals (MH or non-MH) due to lack of training. |
|
Stigma |
Relating to stigma, discrimination relating to MH problems or receiving MH treatment |
|
Transportation |
Lack of transportation to services, public or private |
|
Challenges in Community Life |
Everyday challenges faced by people with MH trying to live in communities, includes overt and covert discrimination, teasing, access to services, employment, social support, etc. |
[1] This report was prepared by
Westat under Task Order No. 280-99-1003, RFP No. 280-02-8073, and submitted to
Claire Heffernan, Project Officer. The
report was authored by Susan Azrin, Ph.D., Garrett E. Moran, Ph.D., and Mary
Ann Myers, Ph.D., with assistance from Barbara Hatfield, Matthew Mishkind,
Ph.D., Stephanie Peterson, Joseph Simons-Rudolph, M.A., and Margaret Tseng.
M.S., M.H.S.
[2] Note that the number of
comments by topic will be greater than the number of people who commented,
since each person could submit multiple comments and each comment might cover
more than one theme.