Tag / case management

ipad with medical record
by karentwinem

Keep Your Own Record

Even today, it’s hard for medical institutions and doctors to piece together a medical record. So it can be helpful to create your own medical treatment record for your loved one with mental illness. That way you have something ready when you need to provide information.

The excellent book “When Someone You Love Has a Mental Illness” by Rebecca Woolis suggests that your record contain information about:

  • Your loved one’s level of functioning before becoming ill.
    • Highest level of school attained
    • Work history
    • Level of basic life skills (cooking, cleaning, money management, experience with independent living)
    • Social skills and relationships with peers
    • Significant achievements
  • Their symptoms.
    • What they are
    • When they began
    • Worst episodes with dates
    • Most effective treatment so far
  • Treatment history.
    • Dates of psychiatric hospitalizations
    • Diagnosis
    • Types of medication used and their effectiveness (with dates if possible)
    • Types of therapy used and their effectiveness (with dates if possible)
  • Your loved one’s level of functioning between hospitalizations and treatments.
  • The names, addresses, phone numbers and emails of all members of the treatment team (psychiatrist, therapist, social worker or case manager).
  • Medical insurance information.

When you are dealing with mental health professionals, you want to appear credible. You make the best impression when you are courteous and respectful of their time. Try to understand that these professionals are under constraints such as:

  • Not being able to be effective with those who refuse treatment.
  • A heavy caseload.
  • Lack of adequate funding.
  • HIPPA and other confidentiality regulations.

Even if the illness is decades long, try to go back through your documentation to create a medical record. It will probably be more helpful than the record that the treatment team has.

nurse and doctor comfort patient
by karentwinem

Who’s Who on a Mental Illness Team

The United States does not have a well-organized system to treat substance abuse and mental illness. Sometimes it’s hard to know who to turn to for your needs. This overview answers the question: Who does what?

Primary care physicians can prescribe and monitor medication, but often prefer that you work first with a psychiatrist.

Psychiatrists are licensed medical doctors with medical and psychiatric training. They can diagnose and prescribe medication.  Some provide therapy.

Psychiatric nurse practitioners have a master’s or PhD and specialized training. They can assess, diagnose, prescribe medication and do therapy. You can usually get an appointment with a psychiatric nurse practitioner more quickly than with a psychiatrist.

Clinical psychologists with doctoral degree make diagnoses and provide individual and group therapy.

Psychiatric or mental health nurses, depending on education and licensing, can assess and treat illness, do case management and provide therapy.

School psychologists can make a diagnosis, provide therapy, and work to provide healthy school environment. My personal experience is that school psychologists do not have enough bandwidth to do an effective job with children who are struggling.

Counselors can help find better ways of thinking and living, as well as help people develop life skills. Some can diagnose and treat.

Clinical social workers has a master’s degree in social work. They make diagnoses and provide counseling, case management and advocacy.

Peer specialists are individuals who have experience with a mental illness and can help others with recovery.

Social workers with a B.A. or B.S. can provide case management, inpatient discharge planning and placement services.

Psychiatric pharmacists have doctoral training and residence training to provide comprehensive medication management. They usually work in a health care system like Veterans Affairs, hospitals, clinics., etc.

job interview sticky note
by karentwinem

Jobs for People With Mental Illness

Note: The sources for this post are NAMI.org, southeast.org, ood.ohio.gov, “When Someone You Love Has a Mental Illness” by Rebecca Woolis and my own experience working for a program that linked jobs to people with mental illness.

Families of people with mental illness frequently pin much hope on their loved ones getting jobs. It can even become almost a fixation. “If he would just get a job …” There’s often hope that a job will lead to more stability, but it usually has to be the other way.

Unfortunately, many people with mental illness are too ill to function in the workplace. They lose job after job, not because they are difficult, but because they are too ill.

However, once a person is on a treatment plan, symptoms can reduce. Increased stability makes it more possible for the person to have a positive work experience. Others can never deal with the stress of a full-time job, which can make symptoms worse. But they may be able to work part-time or on a volunteer basis, instead.

What the Law Says

As we said previously, the lack of sufficient funding for people with mental illness has a big impact on their families. There’s not enough money to hire enough case managers, social workers and vocational counselors. So families often have to get involved to ensure the system works for their loved one.

The first step to getting involved is understanding what the Americans with Disabilities Act (ADA) says. And what it does not say.

Most government regulations define an individual with a disability as a person who has a physical or mental impairment that substantially limits one or more life activities: walking, talking, hearing, seeing, learning, performing manual tasks, caring for oneself, thinking, concentrating and interacting with others. This applies to most people with severe and persistent mental illness.

Title 1 of the ADA covers private employers with 15+ employees, state and local governments, services funded by the government, labor unions and employment agencies. It prohibits them from discriminating against qualified individuals who have disabilities in hiring, firing, advancement, etc. The law does not cover employers with less than 15 employees.

The law says employers may not ask prospective employees about the existence, nature or severity of a disability. What they can do is ask about the prospective employee’s abilities to do the job. (Remember: The law protects qualified people with disabilities.) And none of this applies if the person has an active substance abuse problem.

The ADA requires that employers provide reasonable accommodation to the known mental limitations of an individual with a mental disability unless it would impose an undue hardship on the employer’s business. Undue hardships are due to significant difficulty or expense to the employer based on size, financial resources, etc. 

Reasonable accommodations include job restructuring, part time or modified work schedules, reassignment to a vacant job position, and modification of training materials.

The ADA also impacts colleges and universities. It can require them to restructure exams and materials. Many universities and colleges have offices for disabled students that help them get reasonable accommodations.

Returning to Work Gradually

One pathway to returning to working is to move through a system that gradually requires more responsibility and work skills. This can mean starting as a volunteer in an organization with tasks and required hours.

Then, if this works, vocational rehabilitation counselors can help the person find supportive employment, maybe even part-time. In supportive employment, the employer knows that the worker has a mental illness under treatment. This helps the employer to understand if problems arise and to contact the vocational counselor.

Finally, once a person has the workplace skills and dependability needed, they can get a job.

Getting a Job in Ohio

Since I have lived and worked in Ohio, it is the system I know. Other states’ systems may vary.

The Ohio Bureau of Vocational Rehabilitation provides people with disabilities the services and support to get and keep jobs. The bureau’s staff does these things:

  • Evaluation and treatment of an individual’s disability
  • Information and referral services
  • Vocational counseling and training
  • Job search and job placement assistance
  • Educational guidance (tuition resources and other support)
  • Transportation services
  • Occupational tools and equipment
  • Personal attendant services (reader, interpreter, etc.).

The bureau customizes its services for each person using assessments and one-on-one meetings with professional vocational rehabilitation counselors.

After an application is completed and submitted, an interview is scheduled between your loved one and a counselor. You or another friend or family member may accompany your loved one to the interview. A counselor will talk about career goals, work history, educational background, disability and the services necessary to reach an employment goal.

Eligibility for vocational rehabilitation services is based on four factors:

  • The individual has a physical, cognitive, or mental impairment documented by the appropriate qualified professional (doctor, psychologist or other).
  • The documented impairment causes a substantial impediment (barrier) to employment.
  • The person can benefit from vocational rehabilitation services that lead to an employment outcome.
  • The person requires vocational rehabilitation to prepare for, secure, retain or regain employment

The vocational counselor will be honest if they feel that your loved one is not ready for employment. How much you have to help your loved one with the meeting is a part of that, whether it is said or not. If your loved one can’t get up to go to the meeting or can’t answer the questions without your help, he or she is probably not yet ready for a job.

When your loved one is determined eligible for services, an Individualized Plan for Employment (IPE) is created with the counselor. The IPE is an agreement between your loved one and OOD describing services that will be provided according to your loved one’s choices. Your loved one may be responsible for some costs of the vocational rehabilitation plan, especially college tuition.

When your loved one is ready for employment, the counselor and other OOD staff will help them prepare for the job search. The counselor can offer information on accessing public transportation (if available in the community) or arranging for private transportation. The counselor also can help your loved one with job site modifications for accessibility and efficiency.

They also may be able to set up supportive employment, which can transition to a regular job where people are not told about the illness.

OOD also can help your loved one keep the job if they are having trouble working because of their disability. The counselor can work with your loved one and their employer to determine the services necessary.

In Columbus, Southeast Vocational Services, formerly COVA, is another vocational services program.  I served on the board of this organization, which works with everyone from people with PhDs to those with entry level skills.

Its Transitional Employment program or “Project Work” provides temporary employment to people with a history of severe and persistent mental illness and substance abuse disorders. People get up to 1,000 hours of paid employment services within a 12-month period with the goal of moving from transitional employment to permanent employment full or part-time.

Southeast also offers benefits counseling and re-entry support for people leaving prison. Call Southeast at (614) 294-7117 to ask about it.

Filling out applications

It’s best to work with a vocational counselor, social worker or case manager to fill out applications for jobs. Legally, your loved one only needs to elaborate on the diagnosis if it impacts the ability to do the job. Otherwise, they should not volunteer information about their medical history.

They should tell the truth about their employment history. (Again, this is where recent volunteer jobs can come in handy.) The counselor can help with good answers to explain the gaps in the history.

You can practice with your loved one as a coach for the interviews. They may be anxious and fearful, so a practice … even a dress rehearsal … helps. Help your loved one with the appropriate dress. You can fill out the applications together and make copies in case they get lost or damaged. You also can use relatives who have knowledge of the loved one’s level of responsibility for references. If your loved one has had volunteer experience, those individuals also may make great references.

Getting back into the work world can be a great challenge. If benefits are involved, be sure to learn what the impact will be. May God bless you and your loved one in this effort.

two sets of family hands holding one heart
by karentwinem

Eight Steps to Balance Family Needs

Information for this post comes from NAMI.com, “When Someone You Love Has a Mental Illness” by Rebecca Woolis, MFCC, and my own experience.

When you have a family member, particularly a child, with a mental illness, it is easy to let your concern for them consume your life. This backfires, damaging you and the rest of your family. These eight steps can help you balance your family’s needs.

1. Take care of yourself.

If you don’t care for yourself, the whole family may suffer even more. You may have to adjust your priorities or your lifestyle, but you should avoid letting the challenges posed by your loved one’s mental health condition make you neglect other important parts of your life.

In some cases, the stress of dealing with a family member can create your own mental health challenges. If you begin to feel that you are struggling with sadness or anxiety, do not hesitate to seek treatment for yourself. Caring for your own mental well-being will serve as a model for your loved one to follow, and ensure that you are healthy and able to care for your family member.

2. Be intentional about time with other family members.

Remember that if you have other children, they may resent being pushed to the side if all the attention is placed on their sibling’s mental health challenges. Make sure that they understand what their sibling is going through, and that you spend time with each of them. Keeping a happy and balanced family can be very helpful in reducing stress levels for everyone, which can help alleviate symptoms of mental illness.

3. Get your family involved.

Don’t try to “spare” family members from stress by taking on all the caretaking yourself. Work together to give everyone in the household roles to play according to their abilities. Include your family member with the illness as well, making his or her responsibilities to the family clear.

Other family members may deal with the challenges and obstacles differently that you would like. So be ready to compromise, listen and be open to new ideas.

It is possible you may discover that some members of your family have little interest in supporting you and your child in dealing with challenges posed by your child’s mental health condition. It is also possible that a spouse or significant other may be a negative influence on your child. They may demand discipline for behaviors your child cannot control, deny that there is anything wrong or insist upon an irrational course of action.

Helping to raise a child who has a mental health condition can be stressful, and it is unrealistic to assume that anyone, yourself included, will always react in an ideal way. However, you must also realize that it is your responsibility to protect your child, even from others that you care about.

4. Resume “normal” activities and routines.

Don’t let life revolve around your family member’s mental health condition. Return to a regular routine within the family. Spend time together on activities unconnected to illness, such as watching a movie, eating dinner out or visiting a favorite park. Practice living life with a mental health condition, rather than struggling against mental illness.

5. Answer these questions to decide how to spend your time.

Consider these questions to find the balance that’s best for you and your family.

  1. How much time can you spend with your ill family member without resenting him or her? (for example:  two hours a day, one visit a week, one phone call a week, etc.)
  2. How much time do you need to spend with your ill family member to keep the relationship as good as possible in the long run?
  3. How much time do other family members want and need?
  4. How much time do you need with the Lord to feel His presence?
  5. How much nurturing do you need, either as time alone or time with well friends and family?
  6. How enjoyable and valuable is the time that you and your ill family member spend together? How do each of you feel after spending time together?
  7. Are other family members showing signs of stress, such as physical symptoms, disturbed sleep and eating habits, or depression and anxiety?

Base your time spent with your loved one, either at home or in a visit, on the answers to these questions.

6. Decide about living at home.

Mentally ill people tend to function as their highest levels and their families do the best when the mentally ill person lives somewhere other than the family home.  However, it is very hard to find permanent supportive housing and other housing for the mentally ill.  It can take years. 

Living at home tends to work best if the loved one:

  • Functions at a relatively high level, without many obvious symptoms.
  • Is female.
  • Has friends and does activities outside the home.
  • Does not have any siblings living at home.
  • Participates in treatment and some type of structured activity outside the home.
  • Has a family that has developed skills to be calm, positive, respectful and nonjudgmental of the ill person.

Having the loved one live at home is not advised when:

  • The symptoms are so disruptive that the family cannot live a normal life.
  • Siblings living at home feel adversely impacted by the ill person.
  • Family members are angry at, frightened off or critical of the ill person.
  • The parents’ marriage is negatively impacted in a strong way.
  • The ill person begins to control family members who are then unable to have their normal routines and activities.
  • The ill relative has no outside friends or activities.
  • The family is a single parent alone.

I believe permanent supportive housing is the best choice for people with mental illnesses. You can check with your local Housing Authority or community shelter system to find out if permanent supportive housing is available in your areas.

Permanent Supportive Housing is based on a Housing First philosophy, an approach that assumes that people are much more likely to become stable, contributing members of society when they have a safe, affordable place to live.

The Housing First approach works by providing safe, affordable housing coupled with supportive services (internal programs and external community resources) tailored to meet each individual’s needs. Residents are strongly encouraged to participate. Activities include:

  • Collaborative team meetings
  • Assessment and referral
  • Case management
  • Life skills training (nutrition, stress management)
  • Education enrichment (GED)
  • Health care education
  • Crisis intervention
  • Recovery support
  • Benefits and financial management assistance
  • Workforce readiness training: volunteer, workforce readiness, supported employment, employment services
  • Joint property management and services apartment inspections
  • Housing retention/eviction prevention planning

If your loved one lives at home, remember: Everyone at home has rights.  Try to keep that balanced with any special considerations for the loved one.

At the same time, be realistic in your expectations about the loved one’s behavior. Have a short list of clear house rules:  No smoking in bed.  No loud television or music after 11 p.m. No violence. Use appropriate consequences when rules are broken.

Keep things as predictable as possible. You and your loved one need to get out of the house at different times and have separate activities.

7. Have successful visits.

If your loved one lives elsewhere, you can have regular visits. A shorter visit can be better than one that’s too long. Be sure to communicate love and compassion.

Stay no longer than an hour if your loved one is in a hospital or locked facility. Do not “overprogram” your visit, so you can have some quiet time with your loved one.

Tie visits to your house to behavior. If your loved one is at your house for a day or longer, continue your normal routine.

8. Make activities together enjoyable.

Please keep in mind that sometimes you can’t make the activities enjoyable, particularly if your loved one is severely depressed or psychotic.  If this is the case, the best thing to do is to make sure your loved one knows that you love them and encourage them to continue treatment.

Many times you can have activities with loved ones.  People with mental illness are uncomfortable with unstructured time when there are no activities and people are making small talk. It’s better to find a common interest to base an activity on:  sports, movies, a game, walking together in a park, or visiting a place that interests you both.

Begin slowly and build, if you haven’t been doing this. I try to schedule an outing once every three weeks.  This is in addition to two visits to the house per week.

The six rules for these activities are:

  1. Be realistic about what your loved one can and cannot do.
  2. Have a specific, prearranged plan for the activity.
  3. Avoid surprises.
  4. Have a contingency plan for what you will do if things go badly.
  5. Give your loved one a specific task to focus on.
  6. Accept the fact that your loved one may not be well enough that day to do the activity.

What does “be realistic” mean?

  • Know what your loved one can tolerate in terms of travel time, number of people involved, amount of loud noise and stimulation, etc.
  • Know what you can tolerate in terms of what embarrasses you, how much time you can spend together, etc.
  • Be willing to cancel if your loved one is not doing well.
  • Go where people would be more accepting of your loved one’s behavior (a family-style restaurant vs. a more formal restaurant, the zoo rather than an art museum if your loved one is loud)
  • Don’t expect perfect behavior.

When you are having a get-together in your house with family and/or close friends:

  • Again, be realistic.
  • Assign your loved one a specific task to do, if possible.
  • Tell others in advance what your loved one’s needs are, if you feel comfortable.
  • Allow your loved one to leave or take breaks as needed.

Do you have any other advice for balancing family needs? I’d love to hear it!

by karentwinem

Understand the Inner Life of a Loved One With Mental Illness

Have you ever gone 24 hours without sleep? 48 hours? How did you feel?  How did you look?

Dozed off for a second, awakened with a start and didn’t know where you were?  Lost your sunglasses or car keys and no matter what you did, you couldn’t find them?   Gone driving down a road when your sense of direction got mixed up? Had a song stuck in your head that would not go away? How would you feel if that song stayed for a month or more?

Now let’s put three or more of these items together.  Say you’d hadn’t slept for three days, you heard the same music going on and on in your head, and you couldn‘t find your keys.  How would you feel?

That thought experiment gives you just a hint of the inner life of a person with mental illness. Even in remission and even when properly medicated, chronic mental illness leaves its sufferers in a devastating limbo.

Many people with mental illness are effectively cut off from the predictable, rewarding, self-fulfilling live involvements that make existence meaningful.  They suffer deeply from their inability to be competent and successful in their daily lives.

This threatens our loved ones’ psychological integrity.  It sets up a process where they feel they must protect their “core self” at all cost.

Many behaviors that result – refusing medication, rejecting family support and community programs and disrupting family life, for example – don’t make sense to us. Yet they are directly related to their struggle to maintain some dignity and self-respect in the face of stigma, failure and shame.

Psychological traumas are associated with any serious chronic illness.

 Whenever a person has a serious chronic illness …. COPD, emphysema, chronic heart disease, or a mental illness … two things happen to the sense of self.

First, they lose their protective belief that they are exempt from harm. Much of our sense of safety and willingness to take risks rests on a belief that serious harm or real trouble will never happen to us.  Young people especially still have this sense. Second, they lose their sense of a predictable, dependable future.

This results in some common defensive coping strategies.

These are self-management techniques that are basically maladaptive.  They don’t help people get what they really want, but they do provide temporary psychological refuge when confidence and self-image are taking a nose-dive.

  • Abusive criticism of others
  • Anger and attack
  • Apathy
  • Bargaining
  • Blaming others
  • Controlling or manipulative behavior
  • Defensiveness
  • Denial
  • Dependency
  • Doing nothing
  • Drug and alcohol abuse
  • Envy
  • Excessive sleeping
  • Haughtiness
  • Irritability
  • Quitting a job
  • Refusing help or services
  • Refusing medication
  • Rejection of family and friends
  • Resistance to change
  • Running away
  • Self-absorption
  • Suspicion
  • Withdrawal

From time to time in daily life, all of us will use one or more of these behaviors.  If we are criticized at work … snubbed by someone we thought was a friend … having a fight at home … we may use one of these behaviors if we feel momentarily crushed.  We complain or attack.  We “need a drink.” We get fed up and call in sick.

For us, these responses happen when we feel temporarily defeated.  We normally pull out of them quickly.  We turn to our social and personal life structure, finding comfort and reassurance.

The situation for people with mental illness is drastically different. Their social and personal life is vastly diminished. They often face poverty, stigma, disability, joblessness and social rejection. They are trapped in a runaway train going the wrong way.

The negative coping strategies become a familiar and reliable way to protect themselves from becoming even more diminished.

 

people holding hands
by karentwinem

Mental Illness: Chronic Illness Has Predictable Reactions

Mental illness is a chronic illness with life changing impact. Even when a person is properly medicated, in treatment and in remission, mental illness puts its sufferers in a devastating limbo.  Let’s consider what it could be like:

  • Have you ever gone without sleep for one night? 48 hours? Longer?
  • Have you ever woken up, startled and not sure where you were?
  • Have you lost your keys or your glasses and couldn’t find them?
  • Has a song been running through your head for a couple of hours?  A day? A week?

Remember how you felt in these circumstances.  Irritable, frantic or close to screaming? What if it all happened at once?

Thinking about this can give us some empathy for people with mental illness.  Furthermore, many people who have brain-based mental illness are effectively cut off from predictable and rewarding life experiences.  They suffer from their inability to competently do things that they could do before.

This life-constriction threatens our loved ones’ psychological integrity.  This sets up a process where people with mental illnesses feel they must protect themselves at all costs.  They struggle to maintain some dignity and self-respect in the face of stigma, failure and shame. Still, the behaviors that result — refusing medication, rejecting family and community support, and disrupting family life — do not make sense to us.

Whenever a person has a serious chronic illness, such as COPD, emphysema, chronic heart disease or mental illness, two things happen to their sense of self:

  1. They lose their protective belief that they are exempt from harm.  Much of our sense of safety and our willingness to take risks rests on this belief, especially among younger people.
  2. They lose their sense of a predictable, dependable future.  This results in the use of defensive coping strategies.  These self-management techniques are basically maladaptive.  They don’t help people get what they really want, but they do provide temporary psychological refuge when confidence and self-image take a nose-dive.

In the next post, we will look at typical defensive coping strategies and the empathetic guidelines to help families deal with loved ones who exhibit them.

 

 

 

by karentwinem

Know Your Meds: Mood Stabilizers

Mood stabilizers are typically used to treat intense, repeated shifts in a person’s mood, which may be common for those experiencing bipolar, schizophrenia, or borderline personality.

Many mood stabilizer drugs are also commonly categorized as anticonvulsant medications.

The oldest of them, lithium, has been in use for over 50 years and has proven very effective, particularly for bipolar disorder, type I. However, regular blood tests are required when taking lithium because of potential serious side effects to the kidneys and thyroid.

Newer mood stabilizers, many of which were originally used to treat seizure disorders, may work better than lithium for some people. Mood stabilizers can prevent manic or hypomanic episodes and depressive episodes. but also have side effects to know about and monitor.

Common mood stabilizers include:

by karentwinem

A Good Case Manager Is Hard to Find

The quest to find good professionals to work with your loved one with mental illness may … frankly … drive you crazy.  We’ve paid good money to:

  • A therapist who thought my son had a bad case of “failure to launch” and completely missed the fact that my son was developing schizophrenia. (My hand to God … it’s true.) Even better, when my son had to be taken to the emergency room and the psych ward, we were unable to reach him because his office phone had been cut off for nonpayment.  Thanks, Cigna.
  • A therapist who talked my son with schizophrenia into not taking his medicine.  (Surprise! His ideas about the illness being the remnants of drug use were wrong.)
  • A psychiatrist whose wife/office assistant got me mixed up with another patient’s caregiver, yelled at me, realized her mistake and said, “Please don’t tell my husband.” 

I now realize that we were incredibly blessed with my daughter’s psychiatrist, who spent several hours with her every month for a 11-year period from 1989 to 2000. Today psychiatrists dispense medicine, period. You see them for 15-minute appointments once a quarter, and you work hard to convince your loved one to at least tell them the truth about their symptoms.  It’s relatively easy to lie to someone who hardly ever sees you.

Nonetheless, it’s important to partner with your loved one’s social worker, case manager, therapist and/or psychiatrist. I’ve found there’s a natural period where they assume that you are part of the problem, but it can change over time. And, even if the therapist is unable to tell you things, you have every right to call the therapist with important information.

We worked for 3-1/2 years to get my son moved to a good counseling center where he soon will have a case manager who I personally knew from many months in a support group where he was the facilitator.  He heard me bitch so much about the other social workers and therapists that he was a little worried about working with me.  I got that from this direct quote: “You’re going to be mad at me now.”

Probably not.  The issue with schizophernia is that the illness begins at about age 20, when the young person is trying to get away from Mom.  That makes trying to get the person to do what you know they need to do all the more trying.  Until he left his job, he was a strong thoughtful social worker who did a great job in the role of my son’s advocate.

The biggest issue is keeping a good relationship with a case manager or therapist in place.  Lots of people change jobs, and, when that person is your loved one’s link to sanity, it can have a serious impact.  Things also get better when you are lucky enough to have your loved one entered a permanant supportive housing situation. The case manager for all residents is in an office on-site, and that has been so wonderful.