The Little Book of Advocacy
A Helping Hand
OFFICE OF DISABILITY
CONCERNS
2401 N.W. 23rd, Ste. 90
Oklahoma City, OK 73107-2423
405.521.3756 Voice
405.522.6706 TDD
800.522.8224 Voice/TDD
405.522.6695 Fax
Web Site:
http://www.odc.ok.gov/
This book was written by the Office of Disability Concerns
and carefully reviewed by the following agencies: the Oklahoma
Department of Human Services, the Oklahoma Department of
Rehabilitation Services, the Oklahoma Health Care Authority, the
Oklahoma State Department of Education and the Social Security
Administration. I am grateful to all those who have helped make
this publication possible. I hope it will assist individuals
with disabilities in getting their needs met.
Steve Stokes
Director, Office of
Disability Concerns
Revised: June 2008
Table of Contents:
Foreword. 1
Introduction. 5
Know Your Needs. 7
Ask for What You Need. 9
Know What You Are Feeling. 12
Focus Your Efforts. 14
Identify the Facts. 16
Learn Policy and Procedure. 18
Contact the Right People. 21
Develop Support for Your Issue. 23
Timing and Advocacy. 24
Persistence. 26
Know What Motivates the Person or Agency You Are Asking. 28
Maintain a Record of Your Efforts. 30
Monitor Your Attitude. 32
Be Prepared to Compromise. 34
When Possible, Plan Ahead. 36
Putting It All Together 39
The Appeals Process. 43
Social Security. 46
Special Education. 58
To resolve an issue in Special Education: 62
Oklahoma Department of Rehabilitation Services (DRS) 67
Oklahoma Department of Human Services. 74
The Oklahoma Health Care Authority. 82
In Conclusion. 88
The Office of Disability Concerns fields many questions from
Oklahomans just like you who are interested in services for
themselves or a family member or friend. Many people are
unaware of resources existing now within the state to assist
them in meeting their needs.
Many people have qualified for some type of program serving
people with disabilities, but they have little understanding of
how that program works. Lack of understanding of the program
limits their utilization of that program causing frustration.
Sometimes people call the Office of Disability Concerns with
a need which appears cannot be filled within the existing
service-delivery system. People would like social services to
address their needs, but they have little idea how to advocate.
They do not know who to talk to nor how to present their
concerns.
The purpose of this book is to assist people with
disabilities to get their needs met. The book is divided into
two sections.
The first section of this book will address simple, effective
things which anybody can do to advocate for their needs. The
last section of the book will discuss how to appeal a written
decision within some programs which people with disabilities
utilize most frequently. The last section will also provide
some information on the structure of these programs which will
help navigation within that system.
The goal in writing this book is to give some insights which
will make advocacy easier. We have shared the experiences of
many Oklahomans who are just like you. People with disabilities
have been our trainer for many years now.
People with disabilities often have high expectations. They
also many times have multiple needs. Unfortunately high needs
and high expectations do not always fit within the reality of
existing services. This is the reason why advocacy is such an
important concept in the community of people with disabilities.
There are advocacy organizations in Oklahoma. However as an
individual, you are going to have to be your own advocate in
many situations. This is reality. This book describes how some
Oklahomans have successfully advocated to get their needs
met.
We’ve all experienced roadblocks to getting our needs met.
You may learn to present your case in such a way as to navigate
through the roadblock you are experiencing, or you may learn an
alternate route which will bypass the roadblock altogether.
Even if you don’t get a direct answer to your concern reading
this book, we hope that you will see that other people have
identified the same concern, and you are not alone.
What does knowing your needs mean? It means assessing how
disability has affected your everyday life. You say you are
able to walk. How far can you walk without assistance? How
long can you stand without having to sit down? If you have a
mental health disability, can you work part time? Can you work
full time? Do you feel that your symptoms are controlled with
counseling, medication, or both? Will you need assistance in
getting back into the work force?
A person with a cognitive disorder may consider if they are
able to handle money. Does a person with a disability feel they
need a legal guardian in some area of their lives? If the
answer to that question is yes, what area do they feel they will
need help in?
If you are a person with a visual impairment, do you feel you
are a good candidate to learn Braille? Can you access the
public transportation system? People with disabilities must
review every aspect of their life.
What do they want? What do they need from other people to
build a life? People are not used to thinking about this, but
it is very important to know your needs when you approach the
service delivery system.
People ask, “Why is it important to know my needs? I thought
the professionals were supposed to know all that and figure out
how they could help me.”
If people with disabilities wait for the professionals to
tell them what they need, they are shortchanging themselves.
Social services in Oklahoma are based on identifying the needs
of people they are designed to serve. If people do not
self-disclose their needs, their services will never be
adequate.
Social services today are needs driven. The service provider
does not offer the public physical therapy, occupational
therapy, job coach services, counseling, and architectural
modifications asking which they would like.
The service-delivery system is not a cafeteria where people
walk through and say, “I’ll take some of the green beans, mashed
potatoes and gravy.” The services prescribed for an individual
with disabilities are based on the identified needs of that
individual.
Callout:
|
The service-delivery system is not a cafeteria where people walk through and say, “I’ll take some of the green beans, mashed potatoes and gravy.” |
Now, how does a person describe their needs? Do they tell a
service provider that they need physical therapy four times a
week? The answer to that question is “No”. Tell the service
provider that it takes you twenty minutes to walk from your
front door to your car. Ask for assistance in improving your
walking. It is up to the service provider to decide what
services they can offer to meet your needs.
If you are a person who has had a stroke and have lost your
ability to speak, write down on a pad that you need assistance
in communication. When you identify your need, the service
provider decides how they can help you meet that need.
This is the way the system works. People have a real
responsibility in identifying their needs. If they wait for
someone else to decide what their needs are, they run the risk
of not getting their needs met or only partially getting those
needs met.
People who do not know this become angry and frustrated, but
this frustration is not necessary. People have the key to
unlock the service-delivery system. The serious work in
self-assessment is time well spent. No one else can do that.
Why is it so hard to ask for what we need? For many people
with disabilities, it is hard to ask someone else for
assistance. Even when they have done the hard work of
identifying their needs, it is still hard to approach someone in
the service-delivery system with a specific request.
Maybe it is an issue of pride. People fear giving power to
another person and risking that person saying “no” to something
which is very important. But asking for what you need has
nothing to do with what the other person does. It has
everything to do with what you do.
Asking for what we need is difficult because in doing so we
expose our vulnerabilities. It is difficult to approach a
complete stranger to share that you have a problem with
incontinence. It is difficult to admit that you cannot sign
your name after having had a stroke. For the person who has
gotten a lot of their self esteem from their work, it is
difficult to discuss with another person that they cannot
continue to work and will need public assistance to meet their
financial needs.
Yes, it is difficult, but do it anyway. One person spent a
good part of their adult life expecting other people to meet
their needs. Those needs seemed so obvious to the person with
the disability. This person felt the other people around were
cruel and uncaring because they made no effort to help. Ask for
what you need. Other people cannot and will not read your
mind. They have enough trouble reading their own minds and
learning to ask for what they need.
Let’s discuss this vulnerability which people are afraid to
expose. What is the worst that the other person representing
their social program can do if people dare to ask for what they
need? They can say “no”. That is the biggie, isn’t it? “No”
comes in many forms. You are not eligible for our program. We
do not provide that type of service. You are too old. You are
too young. Is that all right?
Sometimes a particular program cannot help. Ask the program
representative to provide you the written policy highlighting
what applies to you, but it is still all right if the agency is
not able to provide the service you need. You have identified
your specific need, and you have been courageous to ask that
someone or some program assist you.
Before you hang up the phone, ask that program representative
if they know of another program which could assist you. Many
times people who work in social services are familiar with other
agencies and programs. An agency which develops jobs for people
with disabilities may not be able to assist you in meeting your
residential needs, but they may indeed know of sister agencies
which provide residential services.
Asking for what you need is operating in the present. Before
your disability you may have had a highly responsible job, and
you helped to support your spouse and children. But your
disability has challenged you to a new reality.
It is all right for a person to grieve that they are not able
to do all the things they used to do, but it will not help to
get stuck in grief. Move to the present and accept your needs.
When you have accepted those needs, you will be able to ask for
help.
Now what about that other person or agency who has verified
in writing that they are not able to help you? Ask another
person. Ask another organization to meet your needs. Your job
is to get those needs addressed in whatever way possible.
Agency A may tell you they can meet part of the needs you
have expressed but not all of them. Someday in social services
we may have one huge market which will have the capacity to meet
all needs, but that does not exist today.
You may well have to approach more than one person in your
efforts, but that is all right. You have asked for what you
need, and you will continue to ask for what you need until your
concerns are addressed.
“Be true to yourself” is a wise saying. One thing people
need to do in self-advocacy is to become aware of their
feelings. Are you angry about what has happened? Are you
afraid of what may happen to others as a result of a certain
policy? How do you feel about the staff member who has given
you the decision you disagree with? How do you feel about the
agency that has made a decision you disagree with?
Your feelings may be based in reality and then again they may
not. You say, “I have a right to my feelings,” and certainly
you do. But your feelings may or may not be justified
objectively in what is happening. It is important you identify
this. You may question the motive of why the decision was made
that you disagree with. Seek the facts on why decisions were
made before you act.
A person called the Office of Disability Concerns and
explained that a group of people representing an agency had
removed a family member from their home. The person explained
they felt these people had made the recommendation because of a
complaint lodged against them earlier.
Was there any proof that the complaints had resulted in an
unfavorable decision? No, there was none. Unsubstantiated
feelings about the agency are not beneficial in advocating that
the decision itself was wrong. Unsubstantiated feelings may be
of use in putting the advocate on alert for future behavior
which may prove a pattern.
Sometimes people are angry about social services which are
being cut off or income which is garnisheed because of an
overpayment. People may become angry when a housing voucher is
stopped. The causes for the anger are infinite, but the
personal response is similar.
It is important that an advocate be aware how they feel and
how strongly they feel about an issue. Anger can serve as energy
to propel a person to a resolution of the problem or it can be
so intense as to prevent a person from seeing the objective
facts of the situation. In this way it becomes an obstacle to
achieving the desired result.
Callout:
|
Anger can serve as energy to propel a person to a resolution of the problem or it can be so intense as to prevent a person from seeing the objective facts of the situation. |
One person called this office in tears. Their administrator had
called them the day before and shared his decision that the
person was no longer disabled and no longer needed to use the
one handicapped parking place at this private, non-profit
agency.
Reportedly the person had undergone two surgeries and medical
professionals had signed information for the Department of
Public Safety to grant a handicapped parking permit for five
years. The caller was overcome with emotion. If the caller
insisted on the handicapped parking place, they feared the
administrator would dismiss them. Something was wrong.
Fear can be immobilizing. People may tolerate a situation
which is clearly unsatisfactory beyond reason because of their
fear. Learning to advocate for yourself will help in getting
your needs met.
Good advocates seek to be pro-active by setting priorities
for their advocacy. It is overwhelming to look at the
service-delivery system today and think about how services for
people with disabilities could be improved. This is reason to
focus our efforts in order to be more effective.
We may choose an issue which impacts us most directly. We
may consider something which enjoys current public scrutiny. It
may be good to focus on an issue which affects the largest
number of people with disabilities. Out of this maze of
possible concerns, it is worthwhile to choose one and focus
untiringly on that issue until it is resolved.
One advocate for people with disabilities pointed out that
Oklahoma’s definition of “developmental disabilities” was too
narrow because it referred only to people who had an IQ of 70 or
less. This advocate never tired in public meetings of drawing
attention to this gap in service.
This person pointed out that developmental disabilities is a
broad term which includes all disabilities (both physical and
mental) occurring before the age of 21. A person who had a
spinal cord injury and used a wheelchair for mobility may indeed
be developmentally disabled regardless of IQ.
This advocate’s comments were especially powerful because
they were talking about something they personally experienced
and impacted the services of people with disabilities across the
state.
Within a couple years of persistence, our service-delivery
system broadened. We began to serve people who were
developmentally disabled with various physical disabilities
which were not previously served in our state.
When that issue was addressed, this advocate had another
issue for public consideration. It is important to focus energy
if the advocate is going to be successful.
Another Oklahoman had an issue which concerns many people in
our state. This person had an issue of access. They also had
an issue of handicapped parking. These were issues which
directly affected this person who had a lift-equipped van and
who used a scooter to get around in public.
People listened because they knew this advocate was speaking
from experience. If the advocate had chosen an issue which did
not affect them, people might not have listened so readily.
Focus your efforts on an issue, and follow through over a period
of time.
There are many issues out there, but they may not all be
issues which concern a particular person. There’s plenty of
room out there for many people to advocate. We can choose an
issue which we know the most about and have the best chance to
be successful.
In the process of advocacy, people will encounter other
people who have a different opinion about what should be done.
People will encounter a public policy which seems to support
something they disagree with and which no longer seems to meet
the needs of the public. At this point it is useful to identify
all the facts that come to bear.
Facts are objective, verifiable things which can be agreed
upon by all parties involved. Let’s use a hypothetical
situation and say a person uses a nebulizer to breathe. This
person must have this machine which uses electricity to sustain
life. That is a fact. If someone doubts, they may contact the
doctor who has made the diagnosis.
The power company sends a notice that the power will be cut
off because of failure to pay a large bill. The power will be
cut off on a certain day, and there is a letter from the utility
to this effect.
There is no doubt that this letter has aroused a great deal
of fear. What will happen? Panic sets in. It is important to
identify the relevant facts. The finances of the individual are
important. The availability of that next Social Security check
is important. The help from another family member is important,
but there are other facts as well.
Who regulates the utility? Does the resident know someone
else who has received a cutoff notice, and what did they do?
Does the resident know someone with a generator? Can the
individual get a letter from their doctor verifying the need for
a nebulizer to breathe?
Facts bring information and shed light. Facts are places
where there is widespread agreement. They help to counter the
frustration and confusion of conflicting opinions.
Callout:
|
Facts are places where there is widespread agreement. They help to counter the frustration and confusion of conflicting opinions. |
Focus on the facts if you are going to successfully advocate
your position. If an agency where you receive services has a
policy that a grievance must be filed in writing within a
certain number of days after a denial of services, that is a
fact which must guide your advocacy.
Ignoring that fact will result in the failure of your
advocacy before it ever has a chance to be presented. It is
your responsibility to identify facts which you do not have
which are relevant to the situation at hand. Ignorance is no
excuse.
Spend some time writing down the facts which you know.
Gather facts and information which you do not know which will
affect your successful advocacy. To go back to the caller who
had a handicapped parking placard, it is important to know how
long that placard is valid. The administrator and employer of
this person had made the decision that their employee was no
longer disabled and had no further need to park in handicapped
parking.
The Department of Public Safety issues temporary placards
which may be used for six months, and they issue placards which
may be used five years. The duration of the placard which our
caller had has a direct bearing on the situation in dispute.
Know where you stand. Facts provide firm ground.
Policies and procedures are the framework in which resolution
of a grievance takes place. All agencies have policies and
procedures, and these policies and procedures are public
information. If you have a dispute with an agency and you want
to advocate for yourself, learn about the policy and procedure
of the agency which is applicable to your situation.
You say it’s not fair that they make your child share staff.
It may not be fair. It may lower the quality of services your
child receives, but it is agency policy. Be aware of the policy
which is applicable.
Ask that an agency representative send you a copy of the
policy with what is pertinent to your situation highlighted.
Agencies will not act outside their policy although it may be
possible to challenge the policy itself in some circumstances.
Learning policy and procedure is like learning the rules of a
game. You may disagree with the rule, but you cannot really
challenge it until you become aware of its existence. People
complain about administrative decisions all the time without
having the slightest awareness of the policies and procedures
behind those decisions.
One of the first steps in successful self advocacy is
becoming aware. Learn the rules and follow them if you want to
challenge the agency on its decision regarding you.
One governing board in Oklahoma offers the public opportunity
to speak before the board, but it is necessary that a person get
on the agenda to speak before the meeting and that the
individual limit their comments. Those are the rules.
The advocate who attempts to speak at the board meeting
without being on the agenda will be denied the opportunity. The
advocate who is on the agenda but who attempts to speak longer
than the time allotted according to policy will be interrupted.
It is important to know the policies and procedures.
The Office of Disability Concerns received a letter from an
individual who was in state custody expressing that the facility
where they lived did not respect their disability in initiating
punitive measures against them. They felt the facility had
treated them unfairly without regard to their disability.
The agency did indeed have an established grievance procedure
involving several steps toward resolving residents’ concerns
with progressively higher levels of appeal. Grievance
procedures were posted at key communal points in the facility
notifying residents how to dispute an issue.
Policy describes the intent of agencies. These are
guidelines for agency service delivery. Policies and procedures
can be challenged by people with disabilities when they feel
these guidelines no longer meet their needs.
One man in Oklahoma with the cooperation of others
successfully challenged a state law which he felt was not broad
enough to represent his needs. He first got a copy of the
original law so he would be thoroughly familiar with it. After
this, he contacted the legislator who had authored that law and
asked him to sponsor a new bill which was more inclusive for
people with disabilities.
During the legislative session, he followed the progress of
the bill through the legislature contacting committee chairs as
appropriate to convince them to keep the bill alive. The new
bill was successful and signed by the Governor; it became the
new Oklahoma law replacing an older, more narrowly-defined law.
In order to challenge an existing law or policy, the advocate
needs full knowledge of the policy first before they are able to
make the desired changes. A lot of other people have to buy
into the changes in the process.
Policies may change because advocates have successfully
challenged them, but they also change for other reasons. The
U.S. Department of Health and Human Services sets poverty
guidelines for the forty-eight contiguous states and Alaska and
Hawaii. These poverty guidelines are used by a number of
programs to determine eligibility standards for the program.
The poverty guidelines are reconsidered annually and almost
always are revised upward. Individuals or families of various
sizes are enabled to make higher incomes and still qualify as
being in poverty as a result of these changes initiated by the
government itself.
The same thing is true of the Social Security
Administration. At one time, the income that an individual
drawing Social Security Disability Income (SSDI) could earn
before being penalized in their Social Security payments was
five hundred and forty dollars per month. Four years later that
figure was considerably higher.
These changes reflect the fact that Social Security was
encouraging individuals with disabilities to return to work by
making returning to work more profitable for them. Policies
change for whatever reason, and it is important that the
successful advocate be aware of those changes.
One person called the Office of Disability Concerns on an
issue of transportation for people with disabilities. This
person had already written letters to representatives of state
and federal government. When these government officials were
unable to help them, the individual became angry and
resentful.
This person lived in a city in Oklahoma which had annexed a
great deal of rural land back in the 1960’s. Public
transportation was available in the more urban portion of this
city, but it was not available in the rural precincts which
were, by the way, still in the city limits. This person had a
real issue, but this issue was not with state or federal
government.
The issue was with local government. This person began
attending city council meetings and getting on the agenda. They
supported a new person running for city council from their
precinct. This advocate’s energy became focused and through
this focus was successful in getting public transportation
extended to the more rural parts of the city.
Callout:
|
Tell your complete story only when you are reasonably sure that this person can help you. |
To advocate successfully, you have to know the right people
to address. You have to know exactly what your issue is and who
has the authority to make the changes you want. If you do not
know this and attempt to act anyway, you risk the chance of
being shuffled from person to person with no progress towards
your ultimate goal.
Do you need to speak to the director or to a program
administrator? Will speaking to any committee person suffice or
do you need to address the chairperson? Who actually has the
authority to give you what you want? Most organizations will
have an organizational chart which can help you make the
decision.
Specify your issue and ask direct questions to help you get
to the right person. Many people grow tired of telling their
story over and over again only to find they are directed to
still another person. Tell your complete story only when you
are reasonably sure that this person can help you.
Advocacy can be done by a single individual, but often the
individual’s cause is strengthened by developing support from
other people and other agencies within the community. One
person called this office reporting that they were frustrated in
years of corresponding with a person in authority about an issue
which was important to them.
This person had collected a series of letters with letterhead
from the agency they felt could solve their concern. These
letters were signed by a duly-authorized employee of that
agency. The letters were good documentation that this person
was actively involved in getting their concern addressed.
Unfortunately, the concern was not getting addressed although it
was generating a lot of correspondence.
This advocate contacted a local organization which had a
similar interest. When representatives of this organization
became aware of the problem, they espoused the issue
wholeheartedly. The agency contacted the person in authority
asking that the issue be addressed.
The results of this effort were successful and the original
advocate achieved their purpose. Working alone they had not
been successful, but working in conjunction with an agency
brought the desired results.
One advocate located other people who had a similar
disability and faced a similar concern locally. With this added
support, they were able to convince the authorities to expand
the service system to meet their needs. When the authorities
realized that the issue affected more than just one person, they
were willing to sit down and talk and eventually do something to
meet the needs.
Many people begin advocating for an issue important to them
without being aware of already-existing groups who are affected
by the same issue in their local area. The person advocating
for improved public transportation may contact another
organization because they have a natural interest in improving
public transportation also.
In the field of disability advocacy, many people are not
aware that the federal government recognizes a particular agency
in each state with responsibilities of protection and advocacy.
This may provide a natural starting place for the beginning
advocate to express their concern and ask what efforts have
already been made.
Changes in public policy are made when the general public
becomes fully aware of a concern and is ready to address it. An
issue brought out before the public is willing to consider it is
effort which could better be spent elsewhere. A good example of
this is the issue of smoking tobacco products.
There was a time when non-smokers were not aware of the
health hazards of second hand smoke, but then came a report from
the Surgeon General of the United States which described the
health hazards of smoking.
Slowly the work place and public places in this country
became smoke free. Smoking became regulated in such a way that
in many circumstances, health concerns of people who did not use
tobacco products were considered.
Regulation has dramatically changed how smoking is permitted
in public. If you have a concern about smoking in a public
facility, it is probable you will have the ear of the
administrator in charge. You will be heard, and it is probable
your concerns will be addressed promptly.
That would not have been the case many years ago before
irrefutable medical evidence that smoking was harmful to
health. To have gone to a supervisor complaining that a fellow
employee’s smoke was irritating might have fallen on deaf ears
in the past.
The public was not ready to accept that smoking was harmful
then. Later the public became more educated on the subject and
accepted much stricter regulations on smoking.
Advocacy for banning of smoking in public became more
effective after medical evidence began to mount and the public
became aware. Successful advocacy is promoted by good timing.
It is a harder struggle to promote change before the information
and supporting facts are widely available.
When controversy still exists on the desirability of a set of
actions, advocacy will be slowed. Just because you have a
legitimate issue does not mean that you will be heard
immediately.
Many people rush into an issue only to be discouraged that
others do not agree with the same point of view. Discouragement
may lead to a feeling of failure.
If you find yourself advocating strongly for a certain course
of action and sense that the timing is not quite right yet for
your issue, this does not mean that you should give the issue up
entirely. It only means that you should reassess your
strategies and benchmarks to achieve your goals.
Callout:
|
It is a harder struggle to promote change before the information and supporting facts are widely available. |
If you really believe in something, you must persist in your
efforts to have success. One woman called outlining how her
repeated phone calls to a state agency had finally won the
results she sought. She witnessed that if you follow up on your
initial contacts, especially if you have new information, that
you will eventually be heard. This person continued to call as
she also offered new arguments for pursuing a particular action.
People who have applied for services and have been moved to a
waiting list sometimes become discouraged. Waiting lists test
patience and level of endurance. Certainly waiting lists can be
an obstacle to getting what people want and need, but they need
not block getting needs met forever.
If you are applying for some kind of services for people with
disabilities where a waiting list is involved, send your written
application for services. Then follow up that application in
about two weeks asking if the agency has received your
application.
You would be surprised at the number of times an application
may fail to reach its destination for whatever reason. (Be sure
to have a copy of your original application to send back to the
agency in case they have not received your original.)
Let’s presume that the agency has received your application.
They have confirmed that they did indeed receive your
application and can even tell you the date it was stamped into
the office. Ask that employee if they would mind if you called
back to find out where you are on the waiting list.
The answer to this question will most likely be, “No, we
would not mind.” You are only asking for information.
Follow up your initial call in a few months with an inquiry
of where you are presently on the waiting list. Ask the
employee that you talk with and has pulled your application to
mark on that application that you called on that particular date
asking about your position on the waiting list.
Whoever reviews your application will see that you have
called three times over the last year asking about your original
application and your number on the waiting list. This shows
someone that you are still interested in services and that you
are willing to invest some of your time in getting those needed
services.
Persistence is important in self advocacy. In your
persistence it is also important not to become a nuisance. In
the original example, it was suggested to call in a couple weeks
to see if the agency had received your application. This showed
the advocate had a legitimate interest.
But what if the advocate had called every two weeks for six
months asking their position on the waiting list? Too much of a
good thing can be counterproductive. Twelve phone calls in six
months become time-consuming to the employee who is taking the
calls and has many other people to serve.
Legitimate efforts begin to be interpreted as pressure and
set up an adversarial atmosphere with the agency concerned.
There is a difference between persistence and being a
nuisance.
A woman needed one hundred and twenty dollars worth of ostomy
supplies and said to an agency that it would cost them less to
give her this than for her to develop a rash and have to go to
the emergency room. An emergency room visit could cost many
times the cost of prevention.
Financial considerations motivated the provider agency to
give her what she needed. Financial considerations are real to
social-service agencies which are strapped for funds. Show
those agencies that it will cost them less to give you what you
need. Your position demonstrates that there is something in
your proposal for the agency as well as for yourself.
In years past, advocates have argued for services for people
with developmental disabilities in the community rather than
services in an institution. They have come to the table armed
with actual studies which verify that the cost is less and that
the community setting is more appropriate. This is a very
powerful position that serving people in the community is the
direction to go. Administrators listen.
Compliance with federal and state law also motivates people
and agencies to meet human needs. This is not to advise the
advocate to threaten legal measures. It concerns being familiar
with the advocate’s options guaranteed by law and sharing that
information in places where it is applicable.
A law office called regarding interpreter services for their
client. This law office did not know that the Americans with
Disabilities Act of 1990 (ADA) specified that places which
served the public had to make their services accessible to
people with disabilities.
After a consultation, the law office contacted a local agency
which offers interpreter services and paid for this service in
order to serve their client who needed that accommodation.
There are many state and federal laws which govern how
services to people with disabilities must be administered. The
Americans with Disabilities Act of 1990 is the federal law
guaranteeing civil rights to all qualified people with
disabilities.
The Individuals with Disabilities Education Act (IDEA)
governs how schools provide education to their students who have
disabilities. The Older Americans Act deals with mobile meals
programs across the United States. The Rehabilitation Act of
1973 as amended deals with vocational rehabilitation services
across the country.
It strengthens the advocate’s position if they know about
legislation that impacts their issue. They can be more
successful in getting their needs met. The agencies and service
providers are impacted by such laws in how they deliver
services.
People often call this office with concerns about application
for Social Security disability. Social Security is a major
concern for people with disabilities, especially if their
ability to earn a living has been compromised by their
disability.
If a person is not approved for disability payments on their
first application, that person may spend some time in the
appeals process. If a person is approved for Social Security
disability payments on their initial application, that approval
may still take considerable time.
How can anyone remember all of the calls they have made
concerning their application to any social service agency in
this period of time? This is where maintaining a record is so
important.
People applying for any program may keep a folder labeled
with the program they are attempting to access. In this folder
they may put anything which is related to this effort in this
one central place where it can be accessed easily.
One of the first things you may want to maintain is a phone
log regarding your advocacy efforts. In that phone log record
1) who you spoke to 2) when you spoke to that person 3) who that
person represents and 4) a very brief summary of the
conversation. You cannot imagine how useful this information
becomes to you six months down the line.
Your phone log will remind you when it is appropriate to make
a follow-up call to a certain individual. To think you will
remember the gist of a conversation with one particular person a
month from now—even two weeks from now—is unrealistic.
That record you keep on your advocacy efforts will be
invaluable as you persist. The people you contact will be
impressed as you remind them of the last time you spoke with
them and what was discussed. They may be more inclined to
respond favorably to your requests if they perceive you as an
individual who is organized and efficient.
What other things can be included in a folder? Place a copy
of your original application in that folder. If for some reason
your application was not received, you have a copy.
Keep all correspondence which you receive regarding your
application in the folder. Make a copy of any correspondence you
send regarding your application for services and keep this in
the folder as well. Anything which documents efforts to get
services is good to have. Your folder will keep you up to date
on communication you have made to get your needs met.
Your records may take many forms depending on what you are
advocating for. For your child who receives special education
services in the public school, you may want to keep a copy of
the current Individualized Education Plan in a school folder.
Refer to that Individualized Education Plan to ask the
special education teacher how your child is progressing. If no
progress is being made, that is a reminder that you may want to
ask for another meeting to revise your efforts.
If you are a client of the Department of Rehabilitative
Services, you may want to keep a copy of the Individualized Plan
of Employment in your folder. The Individual Plan of Employment
is an official statement of what services the agency agrees to
provide. If the service is not outlined on that plan, the
agency has no responsibility to provide it.
Your copy of the plan will spell out clearly what is the
responsibility of the agency. The rest may be presumed to be
your responsibility.
Sometimes it takes awhile in life to become aware of the
importance of attitude. It can take even longer to fully
realize you have control over your attitude. People who are
advocating for a change are often accused of having an
inappropriate attitude.
When the discussion revolves around one’s attitude, the
original concern is lost. This is a sign that attitude is
inappropriate.
One person became angry when an agency offered a differing
opinion about what was happening in their case. This person
reacted strongly contacting many other people, criticizing, and
blaming others over a period of time. Gradually attention
became more focused on this person’s attitude. The original
issue faded from view.
Consistently maintaining a proper attitude in spite of a
difference of opinion can enhance getting your needs met. One
person called expressing how they got the needs of their family
addressed.
This person was encouraging local officials to respond to the
needs of a person with disabilities. The advocate frequently
got on the agenda to express the concerns and ways which these
concerns could be addressed. Officials appeared to be
stalling. Time passed with no progress.
So, this advocate did something that many people would never
think of doing. The next board meeting, this advocate showed up
with a couple dozen fresh-baked, homemade cookies!
Things began to change. A long-standing policy was altered
to meet the needs of a person with disabilities. It appeared
that this advocate’s demonstration of a good attitude towards
the local officials had a lot to do with the change of policy.
The correctness of the change of policy had to be present
first, but sometimes the demonstration of a proper attitude on
top of this can be that little extra push that makes all the
difference in the world.
It is tempting to take someone else’s decision personally.
Just because an individual has a disagreement with one special
education team, they can generalize this attitude to all special
education teams.
This individual’s attitude has turned negative. This person
is seeing everything through their disappointment, and that is
affecting how other people respond to them.
Monitor your attitude at regular intervals to make sure that
you do not let disappointment color your advocacy efforts. It
is possible to disagree with a person or a group without having
a negative attitude. This will improve your chances at getting
what you need.
Callout:
|
When the discussion revolves around one’s attitude, the original concern is lost. |
Sometimes the single-minded focus that advocates maintain to
fuel their efforts can actually hinder them. This may seem to
contradict what was said earlier about persistence but not
necessarily.
Focus and persistence are important in advocating for change,
but if that focus and persistence includes an unwillingness to
com- promise, the advocate shows themselves in an unfavorable
light and can endanger the original purpose of their advocacy.
Compromise is a willingness to accept what we want with some
qualifications. One Oklahoma family applied for services with
the Developmental Disabilities Services Division (DDSD) of the
Oklahoma Department of Human Services. They stated that the
only service they wanted for their daughter who had a cognitive
impairment was attendant care.
Both parents worked in this family, and their daughter
arrived home from school about an hour before any family
member. The family felt strongly that their daughter’s
disability kept her from caring for herself during this
interval.
An Intake Case Manager at DDSD received the application for
DDSD services and called the family about their concerns. The
case manager explained that if attendant care for brief periods
was what the family felt they really needed, they could access
this service through the Oklahoma Respite Resource Network.
The case manager explained what respite care service was and
let the family know how to apply for this service. (The
Oklahoma Respite Resource Network is a generic service which
offers periods of attendant care when the primary caregiver is
unable to provide this care.)
The family had an option—DDSD attendant care services which
would take some time to access or attendant care services
through the Oklahoma Respite Resource Network which could be
accessed more immediately. The family chose the latter service
reportedly because they felt the generic service was just as
good. The family’s needs and the needs of the girl with
disabilities were met by an alternate resource.
You may be asked to compromise in many different ways. You
are going to be challenged to separate out what is absolutely
non-negotiable in your original proposal and what is not.
A person in one small town in Oklahoma wanted to use a golf
cart to transport their child with disabilities around the
community. City officials said, “All right, we will approve
your application to allow golf carts on the streets of this
community. However, you have to submit to certain regulations
for your benefit and the benefit of other citizens traveling our
streets.”
“You must register your vehicle every year just like drivers
who use cars or trucks. You must agree to use only residential
streets where the speed limit is less than 25 miles per hour.
Finally, you must equip your golf cart with turn signals and you
must show proof of some kind of insurance.”
This advocate accepted some qualifications to their proposal
because they agreed that the community not only had a right to
regulate traffic on its streets, but it also had a
responsibility to do so. The advocate was willing to
compromise, but their compromise did not endanger the integrity
of the original intent of the proposal.
One family moved to Oklahoma after a major natural disaster
in another state. They had a young daughter with severe
disabilities who had qualified for Medicaid insurance in the
state from which they came.
The girl did not qualify for Medicaid in Oklahoma because the
family income was too high. This situation presented a medical
and financial emergency for the family because of the daughter’s
high needs. Even though they had a solid, middle income, the
medical expenses which their daughter incurred were great.
Through his call to the Office of Disability Concerns the
father of this family learned about the TEFRA (Tax Equity and
Fiscal Responsibility Act) program which was new to Oklahoma at
the time of his inquiry. TEFRA was a program born in the
Oklahoma Health Care Authority to enable children with severe
disabilities to be covered under Oklahoma Medicaid insurance in
spite of a family income which would normally disqualify the
children.
TEFRA involved several steps and required families to
re-apply every year, but it offered medical coverage to this
child who would probably not be covered otherwise. The family
appeared to be very happy that such a program existed in our
state.
They contacted the right people and advocated for the needs
of their daughter. An unforeseen emergency had destroyed their
home, and they were trying their best to assure that their
daughter’s needs would be met in their new home.
There was no way this family could anticipate the disaster
which had befallen the state from which they came. They could
only seek the services which they needed as soon as possible
after making the move to Oklahoma. They responded responsibly
given the scenario they experienced.
Another father called this office a couple of years later
with a concern about his son who was thirty-eight years old and
had recently been diagnosed with multiple sclerosis. This man
recognized that he and his wife were elderly and would not
always be able to advocate for their son’s needs.
This advocate was researching accessible housing for his
son. He was also looking at a need for attendant care for his
son in the future. It was true that his son with multiple
sclerosis was still working and functioning relatively well, but
he knew that multiple sclerosis is a progressive disease which
has the capacity to severely impair a person’s motor
functioning.
This father was planning ahead. He was anticipating future
needs based on some pretty sound research he had done on
multiple sclerosis and some serious discussions with the
neurologist who was seeing his son. His son’s needs would most
likely only increase with the passage of time, and this father
wanted to make sure that a strategy was in place to meet those
needs as they appeared.
This same advance planning can benefit you in your advocacy
to get your needs met or the needs of family and friends.
Accessing programs which serve people with disabilities takes
time. Some programs have waiting lists for services. Many
programs require a determination of eligibility and the
preparation of a service plan to meet the needs of the person
with disabilities.
That is why planning ahead is important in your work as an
advocate. Where can you go to address the needs of the person
you are advocating for? In the case of the father who was
looking for accessible housing for his son, what are the
standards for accessible housing? How wide should the doorways
be? How much weight should a person be able to put safely on a
grab bar?
Information gathering is valuable to advocates. It helps
them plan for the future before the stress of the present
becomes overwhelming. It helps to reduce the time it takes to
access the services they need when those needs arise.
Callout:
|
You will renew your hope. |
All of us are advocates. At some time we all attempt to
convince another person in authority to consider our views on
something which affects our own lives directly or the lives of
someone whom we care about. We may not realize that we are
advocating, but that is exactly what we are doing.
When we approach someone whom we are trying to convince to do
something, it is important to leave that person plenty of room
to draw their own conclusions. That person’s decision must be
their decision—not a decision we are forcing them to make.
The natural tendency for all of us is to present our case
with all the subjective emotions which surround that issue which
is so important to us. It is not wrong to admit that you have
an opinion on the issue. Any advocate worth their salt believes
in what they are advocating—many times with a passion. Passion
has its place, but it must be tempered with facts.
Advocacy is like playing a game of chess. Each of the
different pieces on the board has its own power to move in a
particular way. There are rules which govern the game, and a
good advocate knows those rules before sitting down with an
opponent on the other side of the board. There are rules
governing how our advocacy can proceed, and it is well worth our
time to learn those rules before we sit down to play the game.
Not knowing the policies and procedures which govern how an
agency delivers services is a little like sitting down to that
game of chess and not knowing how the pieces move on the board.
The opponent who does know how each chess piece moves is at a
decided advantage over the person who does not have this
information.
Advocacy is a big field and covers many topics. Services for
people with disabilities are delivered by a wide variety of
public and private agencies. It is worth the time to find out
who the right person is to get the job done.
Telling the receptionist in detail the advocate’s concern may
be a poor usage of time and effort. Finding out from the
receptionist who in their agency licenses the local daycare
facility may be very useful if we are concerned about the
practice of a particular facility in accepting children with
disabilities.
It can be very useful to have support for your cause before
contacting the person who is able to give you what you are
seeking. Many times people feel that they are the only one who
is affected by a situation. This is a myth. There are other
people out there with the same problem you have.
There are organizations who are already advocating for what
you want. It is up to the advocate to find those other people
and organizations. Working within a group can be a powerful way
to accomplish an objective.
When an advocate identifies the issue and narrows their
focus, they do well to prepare to stay with that issue for the
long haul. Sometimes you will contact the right person who
gives you what you request quickly. Most often this is not the
case. You will have to contact many people over a period of
time before your voice is heard.
If you have narrowed your focus, contacted the right people,
and kept up your efforts for a long while and still have little
success, the timing of your issue may be off. The public
awareness may not be sufficient to support the change you are
seeking. In this case, you may revise your original concern and
expect less in the immediate future. This does not mean you
give up your concern. It only means you allow more time to
accomplish it.
Sometimes advocates are so caught up in their own concern
that they do not think about the people they are trying to
influence. For an issue to really take off, it must meet the
needs of many people—not just our own.
Sometimes we feel so insignificant in the scheme of things.
We don’t feel like we can do anything to further our cause but
ask the right person. When we get turned down, we feel
powerless and are discouraged. There is one thing we can do,
and it is helpful. We have control of ourselves. Write down
who you talked with and what was said. Record your efforts.
Agencies keep files, and so can you.
Stick to issues—not personalities. If that person whom you
spent so much time and effort to contact does not provide an
answer for you, that does not mean that person is a bad person.
It only means that person was not the right person. Be
patient. Be positive. You are going to get your needs met. It
is only a matter of time.
Become aware of how you feel inside. When you feel you are
getting too angry or too negative about a situation, back off
for awhile and take care of yourself. Treat yourself to
something special. When you feel like it, go back to your
efforts and continue forward. You will be refreshed. You will
renew your hope.
People with disabilities and their families receive services
from a wide variety of public and private agencies in Oklahoma.
Any agency whether it receives some public funds or even if it
operates 100% from private funds will have some kind of appeals
process. That appeals process may be an internal process or it
may be an external process or it may involve both.
If a consumer receives services from the Department of
Rehabilitation Services, that person may take their concern to a
supervisor within the agency. The consumer of services from DRS
may elect to contact the Client Assistance Program outside the
agency to resolve a concern. The consumer may also elect to do
both.
The appeals process will probably be written into the
policies and procedures of the organization you are dealing
with. It is important that you follow the steps of the appeals
process if you are going to successfully grieve an issue.
Sometimes there will be time lines on when something has to
be done. If you fail to do something within that time line, you
may forfeit your right to continue the grievance process.
For instance, to request a Fair Hearing in the Oklahoma
Department of Human Services, you have thirty days after
receiving a written decision. If you wait thirty-one days, your
request for a Fair Hearing may not be honored. Knowing that
appeals process can be critical in getting your needs met. Many
people have no idea how to appeal a decision.
In this section of this book on advocacy, the focus will be
on the appeals process of some of the principal agencies which
work with people with disabilities in Oklahoma. Even though all
agency appeals will not be discussed, information will be
provided to enable you to ask the right questions. There are
common things in appeals in every organization.
Appeals will be discussed in general. This book is not meant
to be considered the definitive and final information on
everything you will need to know for a particular agency’s
appeals process. Agencies do make changes to their appeals
process from time to time—generally not big changes, but changes
nevertheless.
For definitive and final information on appeals, always
contact representatives of the program within which you are
grieving an issue. Ask for written information on their appeals
process.
If that written information appears to differ from what you
read here, by all means follow the written information you
receive from the agency. No one has the power to speak for
another agency except the duly-authorized representatives of
that agency itself.
It is not the purpose of this book to tell other agencies how
to structure their appeals process. It is the purpose of this
publication to enlighten the general public that in many cases
an appeals process does exist and to provide some general
information about appeals in some agencies which serve people
with disabilities.
This book will refer you to websites, publications, and job
titles of people who can assist you further in learning the
details you need to grieve your issue. You may add to this your
own research by asking questions and requesting information.
It is also important to say that following the appeals
process faithfully and with perseverance does not guarantee that
you will receive a favorable decision. It only means that you
will receive a proper hearing of your issue.
You will have the opportunity to present your evidence. You
will have a forum in which to discuss your concerns. With this
understanding, let’s proceed ahead and look at how to go about
appealing a decision in a way where we may be heard. Let’s
begin by addressing how to grieve an issue within the Social
Security Administration.
Callout:
|
…following the appeals process faithfully and with perseverance does not guarantee that you will receive a favorable decision. |
The Social Security Administration defines disability as
“the inability to engage in any substantial gainful
activity by reason of any medically determinable physical or
mental impairment(s) which can be expected to result in death or
which has lasted or can be expected to last for a continuous
period of not less than 12 months.” Notice that this
definition is built around the inability to work due to a severe
disability. It is not specifically built around having a
disability as such.
Many people become frustrated when they are turned down for
Social Security disability payments when they have an obvious
disability that no one could deny. But, Social Security defines
disability as the inability to work in any capacity due to a
severe disability. Many times an individual may have a
disability, but they are able to work in some capacity even
though that job might be different from what they did
previously.
Social Security is the only program in the state of
Oklahoma which provides cash assistance to people with
disabilities. That is said with one slight qualification. If
you are a person who has been declared disabled by Social
Security, you may be eligible for a very small state check if
you also qualify for Medicaid.
Social Security disability payments come in three forms for
people who have disabilities. If a person with disabilities has
never worked or has worked with insufficient quarters paying
into the Social Security system, that person may apply for
Supplemental Security Income (SSI). SSI is also for a person
with low income and low resources.
If a person has worked and paid into the Social Security
system sufficiently according to the rules set up by the
organization and that person develops a disability, they may
apply for SSDI (Social Security Disability Insurance). SSDI
monthly payments are typically larger than SSI payments
depending on the length of time a person has been contributing
into the system and the amount of their contributions.
If a person receives SSDI assistance and that amount is
actually smaller than the minimum SSI payment would be, that
person may be eligible for both SSDI and SSI. (Ask your Social
Security representative if you think you may be eligible for
both programs.)
Occasionally disabled children of a deceased parent who has
contributed to the Social Security system may be eligible to
draw Social Security benefits based on the work history of that
deceased parent. Generally that payment based on a parent’s
contributions would be larger than what the child would draw
from SSI alone.
One of the most common concerns that people with disabilities
have when calling the Office of Disability Concerns is a denial
from Social Security of their application for benefits. This is
quite understandable.
People have often left their employment because of their
disability. A person may have no income whatsoever.
Expectations are that Social Security will provide the income
they need for living expenses. When Social Security denies this
person’s application for disability payments, the person may
quickly be plunged into financial crisis.
It is hard to focus on the step-by-step appeals process in
Social Security when a person is faced with an eviction from
their home or mounting medical bills connected with their
disability. Whatever you can do to ease your financial burden
while you are appealing a decision by Social Security will help
you focus your energies.
When you make application for Social Security disability
payments, Social Security collects your demographic information
to assure that you qualify programmatically for their program.
They turn over all of your medical information to the Disability
Determination Division of the Department of Rehabilitation
Services for determination of your disability and how that
affects your ability to work.
Social Security contracts with a state agency to process the
medical portion of your application according to Social Security
rules and regulations. Most people are not aware of this. The
Disability Determination Division of the Oklahoma Department of
Rehabilitation Services is located in the Oklahoma City
metropolitan area. An Examiner is assigned to your case
materials, and you may call the person assigned your case
anytime during the time they are processing your materials.
If the Disability Determination Division has already issued
an opinion on your case, and you have begun an appeal, do not
call the Examiner at that point because they have already issued
an opinion. Forward your efforts to the appeal.
It takes an average of three months (86 days) for the
Disability Determination Division to process the medical portion
of a typical Social Security application after they
receive your materials from the Social Security Administration.
DDD is making efforts to shorten that processing
time—particularly for people with obvious, severe disabilities
which profoundly affect their ability to work.
Some reasons to call the Disability Examiner processing your
case would be if you had new medical or psychological evidence
to submit which had not been included in your original
application. You may have information about how your disability
has affected your day-to-day function which you have not
provided previously. Or, you may have evidence of efforts you
have made to become employed which have not been successful
because of your disability.
You may call the Disability Determination Division at
800-877-9977 or 405-419-2200 in central Oklahoma. Be prepared
to identify yourself properly, and ask to speak with the
Disability Examiner who is reviewing your case.
Now let’s presume that you have submitted your original
application and even perhaps have called the Disability Examiner
assigned to review your records and have submitted additional,
pertinent information to your case.
One day you receive a letter from the Social Security
Administration informing you that you have been denied Social
Security benefits because Social Security has determined you are
able to work in some capacity even though you may not be able to
continue working at your original job. What do you do at this
point?
Pay particular attention to why Social Security says they are
denying your application for benefits. Many people read the
word “deny” and see nothing after that point. It is important
that you read why your application was denied. You will build
your appeal around strengthening your application on that reason
for denial. Let me give you an example.
Callout:
|
Pay particular attention to why Social Security says they are denying your application for benefits. … To go back to Social Security in an appeal without addressing their concerns may be a poor use of time. |
Social Security denies an application for benefits based on
their determination that the applicant is able to work in some
capacity. They are not denying that the applicant has a
disability. They are saying that this person has a capacity to
work in some capacity even though they are not able to work in
their original job. This applicant will build their appeal
around their inability to work in any capacity. They are
responding to Social Security’s specific concern.
To go back to Social Security in an appeal without addressing
their concerns may be a poor use of time. To respond to Social
Security in appeal fully addressing their reason for denial is
time well spent. Let’s go back to the original example.
Social Security tells a person that they can work in some
capacity. How does this person go about disproving that
decision? The applicant’s opinion is important, but this is not
enough to prove that the decision was wrong. What evidence does
the applicant have which would cast light on the subject of
their ability to work in any capacity?
Let’s say the applicant has a letter from their doctor
stating that because of disability, they need to use a bathroom
every fifteen minutes. This written evidence from the doctor
does affect the applicant’s ability to work. The letter signed
and dated by a doctor is new evidence the applicant will present
in their first appeal to Social Security.
What is some other, possible evidence which would be
pertinent to the claim of inability to work? Has the applicant
applied to work for several different jobs where they appear to
qualify and were never selected? Communicate your efforts to
your Examiner and submit that evidence to Social Security.
This information will be considered.
Just because you are not selected for one particular job does
not necessarily indicate that you do not have the capacity to
work in that job, but if you have applied for ten jobs in the
last six months and have not been selected for any of them, this
at least suggests that some employers may feel that you could
not successfully work at the job for which you were applying.
Communication with your Examiner regarding your attempts at
employment and additional medical evidence can fuel an appeal.
Perhaps you have developed an additional disability since
being denied Social Security. Let’s say that in your original
application, you were claiming a physical disability. In the
six months since you made your first application to Social
Security, you have been unable to leave home or to do any
typical activities. A professional diagnoses you with clinical
depression which is a mental disability.
Any new evidence should be presented with the appeal.
Applicants who appeal a Social Security decision must
request an appeal in writing within 60 days (plus 5 days mailing
time) from the date of the notice they receive. Under
certain conditions, an extension of this time frame can be
granted.
The first appeal which is also known as a
reconsideration is a complete review of all the
original materials you submitted plus any additional evidence.
These materials are routed back to the Disability Determination
Division to a second disability staff other than the original
one who processed your information. The second disability staff
and medical consultation team will base their decision of the
first appeal on all original evidence plus whatever additional
information has been provided.
Three further levels of appeal exist if you continue to
disagree with the decision offered. After the reconsideration,
you may appeal a second time. This second appeal is commonly
called a hearing. The hearing is conducted by
an Administrative Law Judge. Keep in mind that it can take a
year or more for your case to be heard by the Administrative Law
Judge because of a backload of cases. The individual and/or
their representative may come to the hearing and present their
case in person.
A “Notice of Decision” will be issued to the individual and
their representative. It generally takes approximately 60 days
to process the judge’s decision after that case has been heard.
Some people feel the Administrative Law Judge is open to a
little broader viewpoint regarding disability than the
reconsideration level of appeal.
If the Administrative Law Judge issues an opinion which the
applicant still disagrees with, the applicant may continue their
appeal to the Social Security Appeals Council.
The Appeals Council is located in Falls Church, Virginia. It is
the final, internal step in the Social Security appeals
process. Discussion with an Appeals Council member or their
staff concerning your case is not normally permitted.
The average processing time for a request for review is about
eight months from the date the request is filed until the
Appeals Council releases its final action. In individual cases,
however, processing time may vary considerably. Your request
for review of the Appeals Council must be in writing.
If the claimant disagrees with the decision from the Appeals
Council, they may file a civil suit in Federal District Court.
This must be done within 60 days from the date you receive the
Appeals Council’s notice. (There is a charge for filing a civil
action in Federal court.)
Many people ask if they need to obtain a representative or
attorney to help with their appeal. That is a decision which
the claimant will have to make. It is possible that a person
like a case manger who knew you well could represent you in your
Social Security appeal, especially in earlier appeals before
going before an Administrative Law Judge.
Regardless of whether the individual represents themselves, a
case manager represents them or an attorney represents them, it
is important to document how the person’s disabilities have
affected their daily function.
Typically doctors and professionals will submit information
regarding a medical diagnosis of the person, and this
information is needed. However, sometimes no information is
provided in the original application nor in any of the appeals
on how the disability has affected the everyday life of the
individual. Let me give you an example.
One man called the Office of Disability Concerns about his
application for Social Security benefits. The individual related
that he had “trouble with ambulation”. This complaint was
vague.
When asked for further explanation, he said, “When I leave my
front porch to go out to the car, it takes me fifteen minutes to
walk the twenty feet to the car.” That was of great benefit.
It immediately became very clear as to how this person’s
disability had affected their daily function.
People do not realize they can supplement their file with
information on how their disability has affected their
day-to-day function. Are you able to sleep at night? Are you
able to communicate effectively with your family? Can you walk,
and if you can, how do you walk and how long does it take you to
walk a certain distance.
You say you have arthritis. How does that arthritis affect
your dressing yourself? Does it take you longer to dress
yourself than it would a person who does not have your
disability? These are the kinds of things we mean when we
suggest you provide information on your function and how your
disability has affected your everyday life.
Your doctor knows your diagnosis and is able to provide
Social Security with the medical information they need, but in
many cases the doctor is not aware of how you function in
everyday life activities. You may document this information for
yourself, sign it, and date it. Add this to the information you
are providing for determination of your claim for benefits.
Even better than this, prepare your functional documentation
and ask your doctor to sign it and date it on their letterhead.
With the doctor’s signature, it becomes medical evidence which
is given the highest priority by those reviewing your
application.
People often wonder about the decision to employ an
attorney. In the early stages of your appeal while your case
continues to be reviewed by a Disability Examiner at the
Disability Determination Division, an attorney may or may not be
of special benefit.
At the hearing level before the Administrative Law Judge, an
attorney may be of more benefit. It is your decision to make.
Social Security has a publication entitled Your Right to
Representation (Publication No. 05-10075). Call the
national, toll-free Social Security number 800-772-1213, TTY
800-325-0778 to request this publication. The Disability Law
Center with offices in Oklahoma City (800-880-7755) and Tulsa
(800-226-5883) maintains a list of attorneys who take Social
Security cases.
If you desire information on the status of an appeal, contact
the toll-free Social Security number at 800-772-1213, TTY
800-325-0778. You may also contact your local Social Security
office or your local hearing office.
Some other Social Security publications which may be of
benefit to you are Social Security Disability Benefits
(Publication No. 05-10029) and Disability Evaluation Under
Social Security (Publication No. 64-039). This publication
is intended primarily for physicians and other health
professionals. Answers for Doctors and Other Health
Professions (Publication No. 64-042) may also be of benefit
in your research.
The Social Security website is
http://www.socialsecurity.gov/. If you have web access, it
is worth your time to browse this information. You will be
able to find the nearest Social Security office to you on this
website. We have 21 Social Security offices in Oklahoma. They
are located in Ada, Ardmore, Bartlesville, Chickasha, Clinton,
Duncan, Durant, Enid, Hugo, Lawton, McAlester, Miami, Moore,
Muskogee, Oklahoma City, Ponca City, Poteau, Shawnee,
Stillwater, Tulsa and Woodward.
As a post script regarding your eligibility for Social
Security disability benefits, the Social Security Administration
will conduct periodic reviews of any person who is receiving
benefits. It is possible for a person to be approved for
benefits and at some later point to have benefits stopped
because medical records show significant improvement of their
condition. If you disagree with this decision, you may appeal as
has already been described.
In your efforts to receive Social Security disability
benefits, do not hesitate to use the services of your elected
representatives. Since Social Security is a federal program,
you may contact either of our two senators representing Oklahoma
in Washington, D.C. and/or your Congressional representative.
If you do not know who your federal representatives are, call
your local county election board. (The county election board
should be listed in the blue pages of your telephone book under
county government.)
These governmental representatives will have local addresses
in their district as well as Washington, D.C. contact
information. Many federal senators and Congressional
representatives will have people on their staff who deal
specifically with Social Security constituent concerns.
Many parents, friends and family members contact this office
regarding a child who is receiving special education through the
public school system. During any given school year Oklahoma has
about 94,000 children who are receiving special education
services and have an individualized education plan (IEP).
When families have children in special education, they should
receive a copy of Parents Rights in Special Education:
Notice of Procedural Safeguards to inform them on their
rights and responsibilities from the school offering services.
Keep this book in a safe place for further reference, and keep a
copy of your child’s IEP so that you know exactly what services
the school has agreed to provide.
The Individualized Education Plan is an important document
because it drives the services your child will receive. If the
service is not listed in that plan, it most likely will not be
provided. Even if someone has promised you something verbally,
it does not become official until it is written into the IEP.
Callout:
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The Individualized Education Plan is an important document because it drives the services your child will receive. |
IEP’s are reviewed annually, but IEP meetings may be held
more frequently if a need arises to review the IEP. Behavioral
concerns and/or medical concerns are frequent reasons to request
a meeting, but anything which affects your child’s performance
at school can be a reason for the Team to meet again.
Parents may request that particular school personnel be
present at their child’s IEP meeting. They may invite other
people who impact their child’s life. Neighbors, Sunday School
teachers, pastors, and other family members may provide valuable
information to the IEP team to give a more rounded picture of
the child’s performance in multiple venues.
Individualized education Teams are not meant to be
adversarial where a parent is pitted against a school system.
Ideally the IEP Team should function as a team with all parties
working together for the benefit of the child. Many times the
child also participates in the Team by providing valuable
personal information which may help the Team decide what
services will meet that child’s needs.
Just because a service costs more does not mean that service
is a better one. Sometimes a child’s needs are great enough to
merit a special staff person assigned to assist that child
during the school day. Sometimes that need can be filled
through a peer counselor—that is, another student who does not
have disabilities who volunteers to assist the student with
disabilities.
As a parent or family member of a child with disabilities in
the public schools, you have a key role to play in the IEP
team. You know how your child functions in the home
environment. Sometimes a child’s behavior may be very different
from one environment to the other. This is valuable
information.
Parents may become involved in the education of their
children by providing a structured time at home for their
children to complete assignments from school. Parents may
reward their child with something the child likes for good
behavior at school and completion of assignments. Children may
earn time on the computer or a special television program or
time to “hang out with friends” through good school reports and
finishing assignments.
Parents have knowledge of everyday functional abilities which
will help their children in life after they have graduated from
school. Some schools build the child’s curriculum around
academic concerns when they should really be concentrating on
things which will help the child to function more successfully
as an adult. Let me give you an example.
One mother called this office concerned that her child was
failing to learn how to read even though this child was already
fourteen years old. She explained that efforts had been made
for years to accomplish this goal and had never been
successful. What could be done?
It may be a part of your child’s disability that learning to
read is not a practical goal. Functional skills like learning
how to warm food in the microwave may be a practical skill which
the child can learn which would be of enormous benefit in the
adult world.
To go back to reading and writing, a child may have limited
abilities in these academic areas. Time spent learning to fill
out a job application may be valuable, practical writing skills
for that student. Don’t hesitate to provide information to the
IEP Team on needs your child has now which will affect their
ability to function as an adult.
You may have some idea how your child’s disability affects
their ability to function in the school environment. Schools
provide therapies such as physical therapy, occupational
therapy, and speech therapy based on how those therapies will
help your child function at school.
Certainly if your child is experiencing a greater contracture
in the hand they use to write, that child will have greater
difficulty writing. You may bring this to the attention of the
Team and request help in addressing the contracture of the hand.
Teachers and school personnel are the experts on education.
It is important that the IEP Team recognize professional
expertise and respect it. Parents can be of enormous benefit to
teachers who are engaged in preparing children for the
challenges of the adult world. Good communication between
parents and teachers is of great benefit to the child with
disabilities.
One mother whose son had autism explained how she and her
son’s teacher sent a notebook back and forth between home and
school giving each other important information on her son’s
performance at home and school.
Good communication does not mean that family and school will
agree on every part of the child’s education, but it does mean
that they will be willing to discuss their different opinions
and attempt to reach a solution. Let’s look at some ways that
families and schools can use to come to an agreement on the
education of a child with disabilities.
If you have a concern about the special education of your
child, there are four avenues which you can use in Oklahoma to
resolve your concern. You may contact the school district. You
may contact the SEA (State Education Agency). You may seek
Mediation through one of the Early Settlement Centers in the
state. Finally, you may seek Due Process to formally resolve an
issue.
These ways to grieve an issue are not mutually exclusive—that
is, just because you do one of them, you are not excluded from
using the other methods. Mediation may always be used at any
stage of resolving your issue. Due Process is generally the
final stage of appeal in resolving your concern.
Your local school district is generally your first avenue
when you have an issue with special education in your school.
You will have an opportunity to voice your concerns at your
child’s IEP (Individualized Education Plan). You may contact
the principal at the school where your child attends. You may
also contact the School Board of the school district in which
you reside.
To address the School Board at a regularly-scheduled meeting,
you must call in advance and request to get on the agenda of the
board meeting. If you are not on the agenda, you will most
likely not be allowed to speak.
To address the State Education Agency, you must file a
formal, written complaint with the Oklahoma State Department of
Education, Special Education Department. They have several
Compliance Coordinators who may talk with you about the
process. Call 405-521-3351 to speak to one of the Compliance
Coordinators. As a rule of thumb, your complaint should not be
over a year old.
In your written complaint to the SEA, you should include your
child’s name, date of birth, and current educational placement.
You should also cite how the Local Education Agency has violated
one of the requirements of federal law.
The federal law governing the delivery of special education
services in the United States is the IDEA (Individuals with
Disabilities Education Act) which is reauthorized periodically.
The State Department of Education will send you its written
decision regarding your complaint within 60 calendar days of the
receipt of your complaint in most circumstances.
If you are interested in resolution of your concern through
Mediation, contact the Early Settlement Center to ask that a
mediation session be arranged. In central Oklahoma, call
405-522-7872 or 877-521-6677 statewide.
Who are mediators? Mediators are community volunteers
trained in mediation and basic special education issues. They
are certified by the Director of the Administrative Office of
the Courts and screened to ensure neutrality.
Mediation is scheduled at a convenient time for all parties.
It is fair and impartial. It is voluntary. (Both the school
and the advocate must agree to Mediation.) It is confidential.
More importantly, a Mediation agreement is legally binding
on all parties in its decision.
The fourth method of resolving an issue in Special Education
is through filing of Due Process. Due Process is utilized in
only a small fraction of cases annually in Oklahoma, and it is
utilized usually after other methods of resolution have been
attempted.
A Due Process may be filed in writing using either a form or
a letter in which you include your child’s name, address,
school, a description of the facts and your idea of how the
issue could be resolved satisfactorily.
Your request will be assigned to a hearing officer. A
resolution period of 30 days begins to allow time for the
parties to attempt resolution of their issues themselves.
During the resolution period of a Due Process, the parties
may come to an agreement. If the parties do come to an
agreement, they must put this agreement in writing and sign it.
At this point their agreement becomes legally binding,
enforceable in state or federal district court.
A Hearing occurs after a resolution period if no agreement is
reached. The hearing officer is expected to be fair and
impartial. The Hearing will produce a decision within 45 days
unless one of the parties has requested an extension.
The Hearing decision is final unless an appeal is requested
within 30 days of the decision. If an appeal is requested, an
appeal officer will examine the entire Hearing record, seek
additional evidence and give the parties the opportunity for
oral or written argument.
Any party in the Due Process procedure has the right to bring
a civil action if they disagree with the decision of the appeals
officer. This action must be brought within 90 days from the
date of the decision of the appeals officer. The court will
base its decision on the preponderance of the evidence and grant
relief it determines appropriate. (Keep in mind that pursuance
of your cause in civil court will be at your expense.)
In all these methods of dispute resolution, remember that you
must follow accepted procedure. Failure to follow procedure
will result in dismissal of the educational concern before it
has the chance to be heard.
Schools employ attorneys to represent them at certain points
in the dispute resolution process. The Disability Law
Center in Oklahoma City and Tulsa has attorneys on
staff and frequently represents families in their concerns for
the special education of their children.
The Disability Law Center in Oklahoma City may be contacted
at 405-525-7755 in central Oklahoma or 800-880-7755 statewide.
The Disability Law Center in Tulsa may be contacted at
918-743-6220 locally or 800-226-5883 statewide. If the
Disability Law Center accepts your case, you will not be charged
attorney fees.
If you have a concern about the special education of your
child, you may also contact the Special Education Resolution
Center in Tulsa. (Due Process complaints are filed with the
Special Education Resolution Center.) Their local number is
918-712-9632 or 888-267-0028 statewide.
The website of the Special Education Resolution Center is
http://serc.okstate.edu/.
The SERC will provide you information on the procedure you must
follow to grieve your issue. They will not provide legal advice
on your concern.
The Oklahoma Parents Center is a private, non-profit agency
with a wealth of information on the law and issues arising in
the delivery of special education services. It is a resource
for parents and children receiving services. Call toll-free
877-553-4332 to contact a parent advocate. If you have web
access, you may browse
http://www.oklahomaparentscenter.org/.
Other resources include
http://www.idea.ed.gov/. This website is operated by the
U.S. Department of Education and discusses the IDEA (law
governing special education). The Oklahoma State Department of
Education runs another website
http://www.sde.state.ok.us/ which offers an entire section
on Special Education Services.
Vocational Rehabilitation (VR) helps individuals with
disabilities to get or keep a job. In Oklahoma, VR services are
provided by the Oklahoma Department of Rehabilitation Services
(DRS). Individuals with visual disabilities or conditions that
can lead to vision loss are served by DRS’ Division of Visual
Services (DVS). Individuals with other disabilities are served
through DRS’ Division of Vocational Rehabilitation (DVR).
The Department of Rehabilitation Services (DRS) in Oklahoma
may assist people in applying for a specific job. Typically DRS
helps people develop skills they will need to find their own
job. The Department of Rehabilitation Services supports people
to achieve their realistic employment outcome whatever that may
be.
If the applicant does not tell the counselor what they will
need to achieve this outcome, this applicant may not receive the
service. The DRS counselor will know the obvious things needed,
but every person has individual needs. People say all the time,
“I didn’t know I could ask for that.” You can ask for whatever
you need to achieve your vocational outcome. DRS may or may not
be able to pay for it depending o | 
