NADD Bulletin Volume IV Number 3 Article 1

Complete listing

We Need To Go Back To Square One

Nancy Hatch Warner

Several years ago I wrote an article and made a presentation at the NADD conference entitled, HOW TO DEAL WITH THE SYSTEM THAT JUST DOESN’T GET IT! I thought the situation could be “fixed.” My daughter Christine has been in the community “system” for eight years now. NOTHING HAS WORKED. NO ONE HAS EVEN COME CLOSE TO BEING ABLE TO HANDLE THE SITUATION. I came home from the San Francisco conference last November feeling defeated. I have run out of energy and I don’t see anything changing, even with all of the marvelous programs that are now taking place. I still think the “system” can be fixed. Even though professionals and family members know that the “system” is lacking and more needs to be done, I don’t see us going in that direction. More and more agencies are being set up and more programs are initiated. The program for my daughter and for her significant other, Mike, does not change. Why?

I think we are continually setting up ourselves for failure. To begin with, the idea of hiring staff to handle someone like Christine and/or Mike is an example. Family members spend their whole lives trying to work with Christine and Mike—it takes years of experience, working with doctors and educators and other professionals, building on experiences. This information cannot possibly be transferred to one or two direct care staff. Direct care staff are responsible to their boss and they in turn are responsible to their boss, and on up the line it goes. This, in my opinion, leads to the warehousing of individuals into boxes. Parents and other family members cannot find a comfortable box in this hierarchy of boxes.

Christine has been the victim. She has a developmental disability, attention deficit disorder, and a bipolar affective disorder; she came from Vietnam and was adopted by my husband and me at the age of 3 ½ with no diagnoses. She had been abused and had been treated for seizures and congenital syphilis. Five years ago she met Mike and they now live together. Mike has a traumatic brain injury, attention deficit disorder, and an alcohol abuse problem. Christine receives services; Mike falls through the cracks. Everyone working with Christine knows that Mike needs services that they can’t provide and everyone knows that the situation is set up to fail. And then when the situation fails, Christine and Mike are blamed.

I get mixed messages. On the one hand, when I talk with professionals about services they will say that it is an impossible situation. On the other hand, we are promised over and over by professionals that they have experience and that they can deal with the problems. I have yet to see it. It is impossible to take this situation and solve the problems by fitting Christine and Mike into an existing program. I think that there are solutions—no one is willing to do it!

The staffs working with Christine and Mike do not understand their illnesses; they do not understand the medications; they do not understand how to communicate with them effectively; they do not understand how to motivate them. They are not available to them when it is most appropriate. They are not problem solvers.

First—Mike needs five hours of services per week for help with vocational issues, for financial issues, for transportation issues, and for medical issues. Without this help, Mike will continue to fail. The lack of services for Mike creates havoc with Christine’s services. They live together; they share the same space, the rent, the food, the phone, and the cable TV. If we are not servicing them together, we are wasting a lot of time. This results in their not eating properly, not getting medications, not paying bills, having hygiene issues, getting to and from activities and/or work.

Secondly—Christine is receiving services that have never been successful. She does not get her medication as she should; she does not get to the appropriate doctors as she should; she does not receive proper nutrition; she has a hygiene problem that prevents her from working in the community; she lacks transportation. Communication between family, residential and vocational programs are non-existent. Christine needs a more unique program. She qualifies for 20 hours per week of residential services and for vocational services. A total package of $21,590.25 —$15,590.25 in residential services plus $6000 in vocational services.

Instead of using that money in the traditional ways of hiring staff and processing monies through a residential and vocational agency, I think that we need to take that budgeted amount and revisit it.

Most of what doesn’t work is a “control” issue. Christine and Mike don’t want anyone “telling them what to do!” They do need assistance. My theory is that they need assistance from the “back room.” We need to be doing all that we can to assist them to move about in the community as independently as possible. This goal is consistently mentioned by everyone but is never accomplished. An example—how do we allow Christine and Mike to do their grocery shopping independently? How can we get her/them to the grocery store, how can we get her/them to buy the appropriate foods that are within her/their budget? She does not want to go with staff, especially to have staff following her around in the grocery store. These groceries are shared with Mike who is to pay for half of the groceries, but he is out of money by the 10th of the month.

The present pitfalls are the following:

•Staff are unwilling to take Mike with them to the grocery store.

•Staff can only do it at their convenience and are more than likely trying to take two clients at the same time.

•Mike does not have any money for groceries.

•There is no consistent time to get groceries.

•Christine eats obsessively—groceries don’t last.

•They don’t have a list.

•They don’t have transportation to and from the grocery store.

•Christine does not like to spend her food money on hygiene items.

Some possible solutions that I have found it impossible to accomplish via the agencies that have worked with Christine:

1.Christine and Mike need a grocery list that includes food items and personal hygiene items. Or hygiene items need to be purchased at a separate store. The list could be a master list kept on their computer and printed out.

2.Christine and Mike need menus with directions on how to prepare the food. The recipes could be kept on the computer and lists of needed ingredients could automatically be printed out from the computer program.

3.Christine and Mike need to go to the grocery store often rather than once a week.

4.Christine may need medication that helps her with her obsessive eating; we can’t try this at the present time because she is not taking medications properly on the weekend.

5.Neither Christine nor Mike can smell—food has been known to be bad and they are not aware of it.

6.Mike’s money needs to be managed better.

7.A taxi service needs to be set up by phone and/or mail—a staff person working in the background is needed to write up vouchers of some kind so that Christine and Mike aren’t abusing the service. The Taxi Company needs to be paid in advance.

8.Christine and Mike need to be rewarded for shopping, cooking, and taking the taxi.

9.They need a class to learn how to use the computer for grocery lists, budgeting, recipes, schedules, etc. rather than someone trying to teach them individually and invading their space in their apartment. It would require a technology savvy person to help them set up their computer. Going to a class is a more natural community activity. The computer classes Christine has gone to do not accomplish these goals.

10.A “hot date,” time for Christine and Mike to go to the movies or out to dinner or to a social activity, could be the reward each week for the above. Transportation (the taxi) and a safeguard method of paying for the activity needs to be arranged ahead of time.

I have yet to have an agency follow through with any of these ideas. They are not capable because it is outside of their “box.” I have yet to find an agency that is willing to take technology more seriously as a solution to their problems.

Communication, which is almost nonexistent, needs to be done by fax or email. The fax machine has worked well for me and Christine and Mike—the agencies are not willing to do it, nor are they prepared to do it. Monies need to be spent on fax machines, a dedicated fax line, three way calling, computers, printers, etc. The fax machine is a means of clarifying the schedule each day. This is a sophisticated, more independent way of solving one of the problems. Christine and Mike both have trouble when there is more than one or two things on the agenda for the day. The written piece of paper makes it clear; it also avoids conflicts of schedules between Christine, Mike, family and others if everyone is communicating and on the same page. Email is also a cheaper and more sophisticated way of communicating, especially when family members are all over the country. Finding free or cheap email is possible and setting it up to prevent abuse of its use is essential. If there is a way for Christine and/or Mike to abuse a program, they will find it!

It is critical to have continual rewards for accomplishing goals. It is also critical to have rewards for the staff who are going to help them achieve these goals. I think that staff should receive bonuses every time Christine and/or Mike accomplish a goal. The goals would be to increasingly make Christine and Mike more independent. I don’t see this happening in any of the programs Christine has been in. Babysitting is the basis for the programs and crisis intervention is practiced more than crisis prevention. At the present time, by “state” standards, the state would say that Christine is doing well. Anyone who isn’t in crisis is considered doing well. However, there are many unsolved problems and her life should be ten times better than it is.

Taking medication properly is presently a problem on weekends because Christine does not have a routine or anyone helping her on the weekends. I have yet to see staff consistently work with her on weekends, the time when she has the least amount of structure. Technology may help here as well with some type of pager, alarm, whatever. This problem needs to be solved; instead it is ignored because no one has the capacity to solve it. The excuse is that Christine won’t let anyone in her apartment. That is because she doesn’t want anyone invading her space on weekends. Does that mean that we then accept the fact that she doesn’t get meds or help on weekends? That is what happens, but that is not acceptable to me.

I can go on and on about how Christine’s program is not working—it has never worked—it will never work with the present guidelines. The program is a waste of money. Christine and Mike and their family members suffer. I have real difficulty with my anger at the “system.” I know it can work better than it is working. I definitely know that Christine and Mike have so much potential that is ignored and not dealt with properly. So much time and energy is wasted going around in circles, continually dealing with the same problems over and over and over again. Sometimes progress is made, but it doesn’t last. Slowly but surely the “system” creeps back to its “boxes,” trying to fit Christine and Mike into them.

I am the most discouraged I have ever been and more confident than ever that the situation could be 100 per cent better. I am alone. I have written a program for Christine with the state of RI that could be used; this would mean a lot of work on my part, but I would be willing to do it if it would change the situation for Christine. The holdup at the moment is a program for Mike. There is no point in trying to do a plan for Christine if Mike is going to undermine it and not get the help that he so desperately needs. I have been trying for two years to help Mike receive services and I am now convinced that they are not available.

It is very painful for both my husband and I to see Christine and Mike have such a tough life. They do not deserve it.

I realize that the program I am proposing is not a solution for every client. What I do know is that the programs to date have not worked. The support plans have been a waste of money. There is no excitement about progress and goals being met. Instead there is burnout and crisis. Minor, everyday problems require a major amount of work; major problems never get fully addressed. I know that other families and staff feel the same way. Christine and Mike do not have a lot of successes, especially when compared with our other children. However, when they do succeed, the amount of excitement generated from their accomplishment is tremendous—for them and for everyone else. To be successful we need to see this excitement on a regular basis—for the individuals, for families, and for staff.

The following is my idea for Christine’s program:

INDIVIDUAL SUPPORT PLAN FOR CHRISTINE PERSONAL PROFILE:

Christine is a 28-year-old adoptee who was born in Vietnam to an American GI and a Vietnamese woman who were married and divorced. She suffered abuse and lack of adequate care and stimulation in her early years. She has the following diagnoses: Bipolar Affective Disorder with obsessive compulsive behaviors, Moderate Mental Retardation, and Attention Deficit Disorder. She lives with her significant other, Mike, who has the following diagnoses: Attention Deficit Disorder, Epilepsy, and Substance Abuse.

Christine at the age of 3 ½ began living with the Warners—mother, Nancy; father, Jim; brothers, Eric and Joel; and sister, Jacqueline. Since the age of 20 Christine has been living in the community. She graduated with a certificate from a normal High School.

She and Mike have been living together in Maryland (three years) until February of 1999. They now have a great apartment in Section 8 housing in Westerly, RI. Christine has a wonderful ability to socialize, has a good sense of humor, and has some strong skills for living independently and for holding a job. She also has very manipulative behaviors that tell us that she is not getting what she needs. It is sometimes very difficult to read her and to find what motivates her. Her relationship with Mike, her significant other, is a dysfunctional one; however, they seem to be in love with each other and care deeply for each other. There is no separating them.

Christine and Mike need a mixture of very controlled structure and a feeling of independence. Money is a major problem for them along with clear communication of what is expected and what is happening next. It is difficult at this time for them to hold a job. Christine may need medication for her attention deficit disorder. She is on medication for her mood swings, her self-injurious behaviors, a prophylactic because she does not have a spleen, and birth control. She is not good at the moment at taking the medications consistently. For her to handle more than three directives in one day without help is a consideration in working with her. For both Christine and Mike written communication daily is essential. Communication between family, Christine and Mike, and staff is critical to eliminate confusion and manipulation. Mike is not “in the system” at this time, which makes dealing with Christine as an individual a challenge. The greatest threat to their future is Mike’s abuse of alcohol—hard liquor. They have been threatened with eviction and jail for domestic abuse. Mike is verbally abusive when drinking.

Christine and Mike have had some very negative experiences in dealing with agencies and staff. They can appear to be in control of their environment and capable of handling situations when in reality they are not capable—or they may be capable of an activity on one day and not capable the next. There is nothing consistent in their lives at the moment.

“POTENTIAL QUOTIENT FOR CHRISTINE”*

The ultimate goal for Christine would be to live with less and less on-site staff help.

Christine’s potential is the following:

·To take her medications daily, attend her doctor’s appointments, and follow through with her doctor’s appointments.

·To eliminate or reduce negative behaviors such as Self-Injurious Behaviors, Hair Cutting, Overeating and Lying.

·To go to work five days a week.

·To budget her time and money.

·To live on her SSI, SSDI, and her employment income.

·To keep her apartment clean and in order.

·To live with her significant other in a healthy relationship.

·To experience a social life with her significant other, friends, and family.

·To participate in activities that provide exercise.

·To learn to eat balanced meals.

*Christine will never be able to reach her potential without assistance. She will probably always need some kind of help. However, with structure and education, the need for assistance should decrease. Unfortunately, all of the above cannot be worked on all at once, so the items above will need to be prioritized. And often, they are dictated by a crisis.

NEEDS/WHAT IT WILL TAKE FOR CHRISTINE TO REACH HER POTENTIAL

·Technical Supports—fax machine for her and her staff, a computer with recipe, programs, financial programs, word processing, email, and games; three way calling on her phone and or the phones of the staff.

·Teachers (staff) to teach her skills for operating the above technology.

·Teachers (staff) to teach her skills in maintaining her apartment.

·Teachers (staff) to teach her cooking skills.

·Teachers (staff) to teach her budgeting skills.

·Mental Health counselors to help her with her disabilities and with her significant other.

·Doctors and nurse to address her mental illness and her physical health needs.

·Contact with family.

·“Social Secretary.”

·Cleaning Service (when working.)

·“Hot Dates” weekly and at least monthly field trips, sometimes by herself and sometimes with Mike.

·A CASE MANAGER WHO WILL COORDINATE THE ABOVE AND SOLVE PROBLEMS.

HOW WILL WE KNOW WHEN SHE HAS REACHED HER GOALS?

·THINGS WILL GO SMOOTHLY!!!!

·For each of these goals, there needs to be a very specific written plan.

·Example:

·To plan two weeks of menus for balanced meals.

·To establish a grocery list for these menus, to place this on her computer.

·To follow through at the grocery store with a list that matches the budget.

·To follow through again with the cooking of these menus.

·For staff to enable Christine to fulfill this plan even if the staff has to do most of it themselves in the beginning. It is important for Christine to have successes and to build on them, slowly teaching Christine to do more and more on her own.

·To try this plan for at least two months.

·To problem solve, to lessen the expectations for a period of time, and perhaps reset goals if the plan does not work.

WHAT IS THE BACK UP PLAN AND EMERGENCY PLAN?

There is a very strong need to do preventive medicine because the potential for Christine and Mike to be evicted or to land in jail is great. There is also the potential for Christine to become suicidal if she does not take her medications. Therefore, the staff working with Christine has a real responsibility for follow through. A contractual agreement with staff for services is a part of the preventive medicine. Family has come to the rescue many times, but family is burnt out! There is no doubt that it will take a supportive staff, family, and the community (it takes a village) plus the medical community to assure that Christine is healthy and safe.

COST OF PLAN SUPPORTS

Teachers*—Specifically hired to teach the skills necessary to reach the goals.

A specific job description would be written based on the skills of the teacher.

Technology Supports—a working fax for each of the two teachers, the case manager, and the tech support person working with Christine and a fax for Christine. A working computer and printer, along with email. A means to do three way calling for teaching Christine how to successfully use the phone to meet her needs. A dedicated line for her fax, a teacher for learning more computer skills and a technician to fix problems with the computer and/or fax would also be needed.

Community Supports—a membership in the Y, food stamps, library card, necessary ID cards, association with the OSCIL for their help when needed, association with DDcouncil, and other organizations for recreational activities.

Physical Supports—cleaning service; bike rental space; transportation services.

Job Placement, Coaching, Help with Transportation—It is hoped that the staff working with Christine will be able to coordinate her job with her residential plan, shifting funding to this plan and building in bonuses for job placement and job stability.

*Staff will be asked to work on a contractual agreement to teach Christine certain skills or to help her accomplish certain goals. When those goals are met, the staff would receive a bonus based on the difficulty of the goal.

ADDENDUM TO INDIVIDUAL SUPPORT PLAN FOR CHRISTINE

Christine’s vocational plan will be incorporated with her residential plan—$6000.

The twenty hours be in place for a minimum of 6 months allowing staff to be trained and problems to be ironed out.

The hours are decreased to fifteen for three months and then to ten if the plan is working. *

The missing ingredient in Christine’s plan is a plan for her significant other who lives with Christine. He has the capability of usurping everything.

*This will avoid setting the whole plan up for failure. If the plan should work well, hours could be decreased sooner. However, Christine is a very complex individual and will always need assistance. It is my hope that the assistance will not need to be as much “hands on” help, but background help with the use of technology.

BUDGET SUMMARY TYPE OF SERVICE

Assisted Living Staff Support

Two individuals who would teach Christine the necessary skills to live independently, and to find and keep her employed.

One individual who would be responsible for technology related equipment and teaching, including the computer (quicken, Microsoft word, PC recipe file, grocery list, games), fax, and email.

One case manager to coordinate above.

Stipends—To service transportation needs.

Other:

1.Fax machines with service contracts for staff (4) to be given to whoever is working with Christine—not owned by the staff.

2.Three way calling for staff and Christine. Dedicated line for fax.

3.Clothing for job.

4.Storage space for their bikes.

5.Cleaning service if they are both working.

Services By Whom?

4(1) Two combination residential/vocational teachers.

4(2) One individual who would be responsible for technology related equipment and teaching, including the computer (checkbook, savings, recipes, grocery list, calendar and games), fax and email.

4(3) One case manager.

UNIT OF SERVICE/LENGTH OF TIME

4(1) 14 hours/week, 20 hour plan

  10 hours/week 15 hour plan

 8 hours/week 10 hour plan

4(2)3 hours/week, 20 hour plan

  3 hours/week, 15 hour plan

2 hours/week, 10 hour plan

4(3)4 hours/week, all year

UNIT COST

$12.00 per hour

YEARLY COST

4(1)$4368, 14x$12x26

$1560, 10x$12x13

  $1248, 8x$12x13

TOTAL/yr $7176

  BONUSES: $3500

$10,676

4(2)$936 3x$12x26

$468 3x$12x13

$312 2x$12x13

TOTAL/yr $1716

  BONUSES: $1700

  $2416

4(3)4x$12x52

TOTAL/yr $2496

  BONUSES: $1000

$3496

STIPENDS

Eagle Taxi Cab

$100.00 per month

(10 $10.00 vouchers per month) $1200

Staff Transportation Fees: $30/month$360

Doctor in New London, Planned Parenthood in Hope Valley

Storage for bicycles: $480

Cleaning Service: $ 600

$2640

PAYROLL

Ocean State

Community Resources:$500

OTHER

Fax and service contract (4)$500

Dedicated Line for

Christine, fax$120 installation$276 (23/month)

Three Way Calling,

Christine, Staff$132

$3.65/mon x 3 x 12

Printer for Christine’s computer$300

Supplies (computer paper, ribbon, Fax paper, etc.)$150

Work Shoes and Uniform$384

$1862

TOTAL EXPENSES:$21,590

TOTAL FOR ASSISTED LIVING

 $9594 for six months 20 hours/week

3597.75 for three months, 15 hours/week

2398.50 for three months, 10 hours/week

Total$15,590.25

TOTAL FOR VOCATIONAL $6,000.

TOTAL $21,590.25

For further information:

Nancy Hatch Warner
161 A East Beach Road
Charlestown, RI 02813-1602
401-322-7675
email: nwarner7@cox.net