Advocate? Who Me?


Disclaimer:  The stories and examples sited are intended to illustrate concepts.  Each situation is unique and as with any piece of information, it simply cannot addresses all the individual needs of families dealing with the many changes and challenges when a family member’s life is altered by brain injury.

Ask yourself, "What are the critical skills I or my family needs to effectively manage services for my family member?"


​Looking at the past, present, and future helps identify where you are and where you want to be.  You know how the survivor has changed since the brain injury. No one else has your experience and perspective.


For example, make a complete list of all relevant information (snapshot of the survivor:  abilities and strengths, difficulties and needs, and changes since the injury) about the person with a brain injury then break the list down to essential information needed by someone to resolve an immediate issue, problem or concern.


One reality is that emotions are a normal part of everyday life, and living with brain injury is likely to bring more emotions to the surface and may produce ones that take you by surprise.


Setting goals that work is the first step. and involves the person with the brain injury as well. After defining the goals, you may find there are too many things to do all at once.  It is vital to prioritize the goals and set an action plan (finding information, resources, and support)  to help you reach your goals.


Remember, it is important to focus on where you are during the process, and track if you are making progress toward your goals.


Being assertive is realistically bringing your advocacy request to the forefront.  


The Five Elements of Assertiveness are listed below along with a brief explanation.

Listen
Don’t get distracted by personalities: Pay attention to what the person is saying. If you don’t understand, ask questions to clarify. Focus on needs not complaints. Sometimes it helps to make notes, especially if the topic is complex.

Demonstrate that you understand
Check the accuracy of what you think the other person said. You might begin by saying “If I understand what you said,” . . . Pay attention to the other person’s reaction to what you say. If you didn’t quite get it, ask more questions and check again.

Say what you think and feel
Because so many problems can arise because of even a slight miscommunication, it is important that you make sure the other person understands how you feel about the issue as well as what you are thinking about it at the moment. Remember to use “I statements”. For example, “I feel very frustrated right now.”, or, “I think my son can do more than one hour of therapy a day”.

 Say specifically what you want to happen
If you have a reasonable, well thought out request that reflects clear goals and are within the abilities of everyone involved, a clear request should be either granted, or at least, be a starting place for negotiating what can be done. If your request is vague, confusion is more likely, and what one person is committing to may be completely different than what the other person thinks is the case. Frustration is almost sure to follow.


To avoid this problem when suggesting a solution
* Be concrete and specific
* Be realistic
* Include timelines

Consider the advantages and disadvantages of joint solutions
Perhaps the best solution would be the one that both parties develop together. If you see that the solution you presented just won’t work, maybe together, you can develop one that will. Often, when both parties approach a problem as a team, the best solution will appear, one that neither party thought of individually!

IMPORTANT POINT:  ​Being assertive means being efficient when you communicate in a one-on-one situation.  


In many instances, you will only be given a limited amount of time and it is best to come well-prepared to limit the stress and feelings of frustration that come from not being able to fully discuss a situation.   Use the following as a guide when preparing your advocacy strategy.  When finished ask yourself, "what are the three most important things that I want this person to know? "


Reducing this list to a two-minute description forces you to prioritize what is most important. The ability to quickly and clearly describe the survivor is a valuable skill that you can use repeatedly in meetings, interviews and discussions.


About the injury...
* how long ago was the survivor injured
* how was the survivor hurt
* how serious was the injury
* was the survivor in a coma
* how long did the coma last
* did the survivor have other injuries
* how long was the hospital stay
* was the survivor in a rehabilitation  program
* did the survivor receive PT?, OT?, Counseling


Describe the survivor now...including changes in
* physical abilities
* energy and fatigue
* speech and language
* vision
* personality
* hearing
* appearance
* behavior

* judgment


Describe how the survivor thinks and learns now, including changes in…
* attention
* concentration
* memory
* organization

* planning
* reasoning
* problem-solving


Describe how the injury has affected the survivor emotionally, including changes in…
* confidence
* temper and irritability
* awareness of others
* social skills
* alcohol or drug use


Describe how the injury has affected the survivor’s ability to get along with others, including…
* friendships
* personal relationships
* employer  relationships
* family relationships
* sexual comments or actions


Describe how you help the survivor, including…
* reminding and memory aids
* organizing and planning tips
* cueing strategies
* arranging rest periods
* changing behaviors
* listening techniques
* suggesting problem solving strategies
* making decisions
* developing safety and emergency plans
* employing written and verbal  communication


IMPORTANT POINT:  Attitudes can change through information and experience - Families need to continually educate others about brain injury in order to get the support and understanding needed for the survivor.


When you know the steps in your action plan, you will probably need information from various sources. You may also need referrals. And as you progress, you will probably need some support.   


What’s next? Figuring out what information you need and what to collect depends on what you want to do and what help is needed to get there.  When gathering information about services and programs, it is important to ask if the following affect eligibility:

* Current age of survivor
* Age when injured
* Town where survivor lives
* Income
* Employment
* Living situation
* Diagnosis or primary disability

* Secondary disability


Work

If the goal of the survivor is to find a job, then you need information about vocational rehabilitation services such as job counseling, writing a resume, interviewing, filling out applications, and accommodations on the job. Who in your community has hired people with disabilities? You will also need to know how the income from a job would affect disability benefits and medical coverage. The survivor also needs transportation to and from work.


Things to consider:

* employer’s disability policy
* applying for social security disability benefits
* finding a driver evaluation program
* determining if it is likely the individual will work again in the future
* possible career transitions or related work areas

* a support group to reduce isolation


Housing

If the survivor’s goal is to find an apartment that is accessible and affordable, then you need information on special rental subsidies or mortgage programs for persons with disabilities. You need to know who is responsible for accommodations such as ramps and handrails. Will help with cooking, cleaning or physical care be needed and where can it be found?


Things to consider:

* locations of group homes, supervised apartments, or supported living programs
* the cost of these programs
* how to better handle difficult behaviors


Future Planning

If spouses, siblings, and parents are worried about who will look after the best interests of the survivor when they are deceased, then information is needed about estate planning, guardianship and conservatorship.


Things to consider:

* back up plan in case of caregiver illness or hospitalization
* revising current will and establish an estate plan


Other Things to Think About

* substance abuse counseling programs
* support group for young adults
* health clubs
* options for work 

* advertising for a roommate to split expenses


IMPORTANT POINT: Keeping track of telephone calls, conversations and meetings, filing copies of reports and gathering brochures and handouts is very important to fitting the pieces of the puzzle together.  A Contact Record helps you file and organize information as you speak with persons in programs, resources or agencies.


Where else can you turn and w hat do the federal laws say and how can they help?

The programs described next are the main building blocks for services that are either funded or protected under federal legislation.  Information is readily available from pamphlets and the internet.

 Americans with Disabilities Act - Covers the rights of persons with disabilities for . . .
* Public transportation
* Accessibility to buildings
* Hiring and firing on the job
* Civil rights of persons with disabilities

Suggested contacts include the state Department of Vocational Rehabilitation, Office for Disability Rights, and the Office for Social Security.

 Income and Disability Benefits
* Social Security Disability Insurance (SSDI)
* Supplemental Security Income (SSI)
* Medicaid
* Medicare
* Food Stamps

Suggested contacts include the Office for Social Security, Department of Public Welfare.

Housing
* Provides startup or partial funding for housing and rental subsidies for urban and rural communities. Includes…
* Elderly housing complexes
* Special units in HUD funded buildings for persons with disabilities
* Rental subsidies

Suggested contacts include state, regional or local Department of Housing, Department of Elder Affairs, Department of Consumer Affairs.

IMPORTANT POINT:  You may also want to ask friends, professionals you know, support group participants, and others who understand your situation if they know about any of the information you need.  By looking in the right places, you reduce the frustrations you may find by gathering too much information or information that isn’t that helpful.



Disability Rights Wisconsin also provides an Advocay Tool Kit.  You can download at copy from their website at http://www.disabilityrightswi.org/archives/51

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