Good special needs services are intensive and expensive. Resources are limited. If you have a child with special needs, you may wind up battling for the services your child needs. To prevail, you need information, skills, and tools. This article is designed to provide you with some basic information on how to get what you need for your disabled child and to leave you with the knowledge that you are not alone as you travel this path.

Put simply, an advocate is someone who speaks on behalf of another or takes action on someone’s behalf and in their best interest. This may be a friend, family member, organization, professional, lawyer or yourself.

An advocate performs several functions:

      Supports, helps, assists, aids and provides advice

      Speaks and pleads on behalf of others

      Defends and argues for people or causes

 

Advocacy promotes social inclusion and heightens awareness across wider society to the obstacles faced by people with disabilities. Advocacy allows for all voices and opinions to be considered when services and policies are developed. Special needs advocates work to improve the lives of children with disabilities and their families and they can be of several types.

 

Parent Advocate

 

Parents are natural advocates for their children. No doctor, school administrator, therapist, teacher, social worker, judge or anyone knows your child better than you do. You have lived with your child with a disability longer and more intimately than anyone else. Only you have the long and personal perspective. You should play an active role in the planning of your child’s life.

Learning to advocate for your child is an essential requirement for parents of children with special needs. Educating yourself is critical. You do not have to become an expert in disability law but, it is very important to learn what your child's rights are before you can fight for them.

Most importantly the process of advocacy for your child begins with you. You must begin the process of identifying the needs of your child and start the ball rolling by approaching professional services before anyone will become actively involved in assisting you. After all no one knows about the needs of your child unless you tell them.

Family Advocate

This is where a family member advocates for an individual with a disability. Sometimes a family member possesses special knowledge or abilities that enable them to effectively participate as an advocate for the child. Other times they step in if the parents are unable to advocate for their child.

Self Advocate

As the disabled child ages and if it is within their ability they may choose to advocate for themselves to obtain equality in all things. This is often the case on college campuses where disabled individuals are willing and able to become active advocates for their needs. We also see grass roots efforts by individuals to effect social change in areas that are often overlooked but become obstacles to individuals with disabilities.

Peer Advocacy

This type of advocacy is provided to persons with disabilities by an agency, social services organization or court. It lacks the personal relationship of the parent or family advocate however these individuals can be very experienced in the inner workings of our governmental, educational or social services systems and additional support services.

Citizen Advocacy

Where one advocates for another voluntarily; citizen Advocacy programs build long, lasting relationships between ordinary citizens (citizen advocates), who are unpaid and independent, and people with intellectual disability. Citizen advocates are asked to make a commitment to represent their rights and interests as if they were their own. A citizen advocate may assume one or more advocacy roles, some of which may last for life. Having people who know and care about us, and speak out on our behalf when necessary, enhances and provides security to our lives.

This type of advocacy is slowly becoming more popular. Sometimes students will become advocates while doing required internships or as a community service project. Other times concerned and well meaning neighbors will lend a helping hand when a friend cannot do for themselves or doesn’t have a family. Or it may take place through an informal support group which focuses on specific disabilities.

Collective Advocacy

Where self-advocates unite to speak up for their rights as a collective voice. Collective advocacy works well when we are seeking to influence political bodies whether it is a board of education, local government or federal government. Collective advocacy also takes place within support groups and it allows us to learn advocacy procedures more quickly by sharing our collective experiences thus minimizing the learning curve. Collective advocacy empowers disabled individuals as a group and allows them to become more recognized.

Professional Advocacy

When we speak of professional advocacy we are usually thinking in terms of “high power” such as hiring the services of an attorney or a physician or other experienced expert. These are the pros and they are very skilled at getting results that we may not otherwise be able to obtain. Too often we use the professional advocate as a last choice rather than a first choice often enduring a lengthy period of frustration, dissatisfaction and inequity. It is human nature to try to do for yourself before asking for help. Or perhaps an individual truly doesn’t know how to seek assistance. It is important to establish a meaningful relationship with a professional advocate early on. The small cost will more than offset the return on your investment in terms of speed of results, minimizing stress, and financial loss as well as in such things as lost time, depressed attitude and other performances that are difficult to measure and place a value on. Unfortunately for many disabled children, the clock is ticking and this is the fastest and most professional route to get the results that you need immediately.

It is best to choose advocates within all of these types in order to provide your child with the best opportunities. You may then select the ones that will work effectively in a particular situation or have several advocates working toward several different goals at the same time.

Situations that may require an advocate

       Legal matters

       Special Education

       Insurance Coverage

       Filing for Social Security Disability

       Accessible Housing

       Medical Care

       Community Access

       Financial Planning

       Employment

Legal Advocacy

Legal advocacy sources are dedicated to protecting and advancing the civil rights of people with disabilities through legislation, litigation, advocacy, technical assistance, and education and training of attorneys, advocates, persons with disabilities, and parents of children with disabilities. A legal advocate may be necessary for complex legal matters such as in medical malpractice cases, discrimination or employment or financial matters.

The most common problem for families of catastrophically ill or injured persons is determining how to pay for past and continued medical treatment and care. It is common for the parents and family of a seriously ill or injured child to become physically and mentally exhausted from efforts to cope with the situation. If your child has suffered a catastrophic injury your time is limited in which you can seek compensation for your bills, expenses and losses and you should consult with an attorney who has experience in this area of law. It is important to understand that you wouldn’t hire your family doctor to do open heart surgery, likewise you need an attorney that specializes in your specific area.

Attorneys are great legal advocates and tend to get the attention that a matter deserves quickly and most often with a simple and direct letter rather than a law suit. A good legal advocate should be one of the key players on your advocacy team.

Special Education Advocacy

The law gives you the power to make educational decisions for your child. Do not be afraid to use your power. Use it wisely. A good education is the most important gift you can give to your child.

The Federal Government guarantees that the school provides your child with a “free appropriate public education” that includes “specially designed instruction . . . to meet the [child’s] unique needs and designed and implemented in such a manner as to permit “meaningful” educational progress in relation to the students educational potential . . .” (20 U.S.C. §1401)

Most parents do not fully understand the inner workings of our educational system. They view a school as a place to send their child to learn reading, writing and arithmetic. As a result many disabled students do not receive an appropriate education. Schools avoid inclusion of disabled students, write faulty IEP’s, claim a lack of resources or funding to meet the needs of the student or are simply unaware of the incredible strides that have been made in the education of children with disabilities in other parts of the country.

A special education advocate understands all of the pertinent issues surrounding the education of children with disabilities and knows how to request specific services so that they will be approved and funded and can also assist in setting appropriate and meaningful goals for your child’s IEP.

Insurance Advocacy

Many families do not have the proper insurance coverage. Unfortunately they do not realize that they do not have proper coverage until after an accident occurs. This creates a maze of problems and issues sometimes involving your automobile insurance, life insurance, liability and medical insurances to name but a few.

You cannot rely on your insurance company to be forthcoming when presenting a claim to them. It is very well known that insurance companies wrongfully deny claims every day or try to pay out less than what you are entitled to receive even though you have faithfully paid thousands of dollars in premiums over the years.

The most common insurance problems are; wrongful denial of a claim, slow payment of claims, not being able to afford adequate insurance, assuming that companies will automatically give you “proper coverage” for your family and signing away rights before the full extent of injuries are known.

Your insurance agent is not your friend. They may be friendly, but insurance is big business and to the company it is strictly business. How many times have you heard “it’s nothing personal, it’s just business and this is the way it’s done”. While you end up with the loss that you thought was covered under your insurance policy; and may actually be covered.

Have you actually read the master copy of your insurance plan? If not, you fall into the vast majority who have just signed for the insurance on good faith. If you answered yes, did you really understand what the master plan said and covered? Insurance plans are often very confusing to understand and good faith vanishes upon presentation of a claim.

Finding adequate health coverage for a catastrophically ill or injured child is a monumental task. Governmental and private insurance have enacted legal, contractual, and practical obstacles which make it very difficult to find adequate health benefits.

To navigate your way through this insurance maze you need an insurance advocate. Someone who will sit and review the master copies of the various insurance policies and find the company and policy that is right for you.

Social Security Disability Advocacy

Disability is a subject you may read about in the newspaper, but not think of as something that might actually happen to you. But the chances of becoming disabled are probably greater than you realize. Studies show that a 20-year-old worker has a 3-in-10 chance of becoming disabled before reaching retirement age. People are only temporarily abled. The fact is that if you live long enough, you will become disabled in some capacity.

A Social Security Disability Advocate, also known as a Disability Consultant or Non-Attorney Representative, is a specially trained individual who assists others who are applying for Social Security disability benefits. 

The field of disability advocacy was created by Congress and is administered by the Social Security Administration. These origins are important because they directly address both the validity and potential of this field. 

The duties of a Disability Advocate include assessing a case to determine the approximate percent chance of winning. Develop the case by acquiring copies of the client's medical records.  After evaluating the records, creates a written argument based on the findings.  Finally, submits the written argument to SSA for consideration.  By law, SSA must consider an advocates argument before making its final decision.  The advocate’s argument greatly enhances the client's chances of winning benefits. 

Social Security disability is not a welfare program!  It is an insurance policy paid for by working people and was intended to act as a financial buffer in case of serious illness or injury.

However, many people are denied these benefits because they do not understand the system or an inability to find effective representation.  The Social Security disability process is complex.  It's not enough for a person to just apply for benefits.  The applicant must win his benefits by meeting a complex array of internal policies based on little known Social Security criteria. 

Up to eighty percent of applicants are denied benefits on first application.  Of those denied, most simply give up, feeling that there is nothing they can do when faced with such a powerful bureaucracy.

A Social Security Disability Advocate can work for you to receive the benefits that you are entitled to and only collects a fee if they are successful in obtaining benefits for you.

A good Social Security disabilities advocate may have a success rate as high as 80%.

Accessible Housing Advocacy

Moving into a new home is an important step for anyone, but what if you couldn't live where you wanted to because you have a disability. The disabled community, many times, is not fully aware of their rights to get the housing of their choice so they can live comfortably. Where would you turn if you could not find an accessible home?

An accessible housing advocate maintains an inventory of accessible and affordable housing and can direct consumers to subsidized housing programs. They will maintain an inventory of wheelchair accessible units (apartments, houses, condos, etc...), including hotels and motels. 

A housing advocate can provide basic information on Rights of Tenants with Disabilities under the Fair Housing Amendments Act of 1988 and make information on accessibility standards using both state and federal codes available to owners and tenants.

Medical Advocacy 

Americans with disabilities consume a large portion of the nation's health care services. Despite the large numbers of disabled individuals who need these services and the Americans with Disabilities Act (ADA), there are many barriers that reduce the quality and accessibility of their care. One type is physical barriers that make health care settings unfriendly and inaccessible. In many cases, individuals also lack the transportation and support services they need to get to health care appointments.

There also are invisible barriers to care, such as policies that deny service to individuals who cannot easily get up onto exam tables, or that let doctors refuse to see individuals with disabilities. There also are health care providers who have little or no knowledge about certain disabilities. As a result, individuals with disabilities oftentimes receive inadequate health care.

Over the last two decades, a shift has occurred in our society’s perception of disabilities and people’s ability to live with them. Technological and legislative advances mark a growing awareness that disabilities can be overcome, and that, despite disability, people can continue to live independent and active lives. With the aid of modern assistive devices, people with significant mobility limitations are able to engage in their communities. However, Medicare’s standard for coverage of such assistive devices—“durable medical equipment” (DME)—does not reflect this shift.

There are other agencies and non-profit groups that will provide for durable medical equipment if you know where to look and how to apply. For that matter Medicare will provide durable medical equipment if the application is worded correctly.

The financial hardships of many individuals eligible for Medicare due to a disability begin once they are determined disabled by Social Security but before they have Medicare benefits. From the time an individual is diagnosed with a disability that prevents the individual from engaging in any “substantial gainful activity,” it takes 29 months to receive Medicare. The individual must wait five months to receive Social Security Disability Insurance (SSDI), income support administered by the Social Security Administration. SSDI is a prerequisite to getting Medicare, and Medicare eligibility begins 24 months after a person first receives SSDI. For many people with disabilities, their first trial is securing health care during this nearly two-and-a-half year stretch.

38% of those surveyed had no health insurance during the two-year period between qualifying for SSDI and becoming eligible for Medicare benefits.

A medical advocate keeps abreast of the agencies that fund equipment and technology as well as other medical services that individuals with disabilities typically require.

Community Access Advocacy

Architectural, communication, programmatic, and policy barriers prevent people from participating fully in society.  People with disabilities cannot assume they can use common public places, such as stores, banks, offices, and restaurants, or participate in ordinary activities, such as working, getting an education, visiting friends, and attending community events.  Most non-disabled people take these freedoms for granted.

Accessible communities are places that work to support the independence, comfort, self-esteem, and security of all of its members, including people with disabilities.

 

Accessibility doesn’t just mean removing physical barriers to mobility.

For people with disabilities, an accessible community is one where there are employment opportunities, affordable housing options, support services, accessible transportation, recreation activities and entertainment options.

 

What will you do to ensure that the mobility of people with disabilities is improved in the planning and development of your community? This is where a community access advocate steps in. They are knowledgeable in the ADA laws and in space planning and are able to supply communities with the guidelines to make their community accessible.

 

Financial Planning Advocacy

Financial advocacy services provides information and helps disabled consumers formulate strategies which can get them started on the road to financial independence.

They provide counseling on trial work periods,  impairment-related work expenses, PASS - Plan to Achieve Self-Support, other work incentives, retaining benefits while employed, leaving the SSI-SSA Programs

The Supplemental Security Income (SSI) program provides cash benefits to needy individuals who are aged, blind or disabled. There is no minimum age requirement for eligibility under SSI. However, unlike ordinary Social Security recipients, SSI recipients must meet certain income and financial resources tests to qualify for the program's benefits.

Contemplating your own mortality is always scary, but it's particularly frightening if you're the parent of a severely disabled child.

Routine estate planning can be a nightmare. Instead of simply figuring out who gets the house and the mutual fund portfolio, you must wrestle with hard questions about who will care for your grown child when you're no longer around.

Leaving an inheritance to a disabled child can create more problems than it solves. A disabled adult with as little as $2,000 in assets will be disqualified from government programs, such as Medicaid.

The answer to this dilemma is to have a financial advocate who is trained to guide you through the estate planning process.

Employment Advocacy

Parents of children having disabilities and serious medical conditions are at high risk for employment discrimination. However there are laws in place to protect you while allowing you to take an extended leave to care for your child.

As you child grows into an adult, it has been found that people with developmental disabilities face barriers to services, employment and income. Poverty and disability are strongly linked.

Jobs: how do you get them, where do you get them, what can you do to improve your chances...? Employment advocates are geared toward individuals with disabilities seeking employment, employers who want to know more about hiring people with disabilities, and policymakers.

 

Conclusion

 

Raising a child with a disability takes us along a path that is filled with obstacles and a myriad of twists, turns, intersections and dead ends. It can be both physically and emotionally exhausting. For a single individual to navigate this path by themselves is at best very, very difficult. There is simply too much to learn and you cannot be an expert in all areas. Advocacy gives you the help that you will need so that your child has the best opportunities. It helps to level the field so that your path is not also an uphill one. Avail yourself to as many advocates as you can get on your child’s side. Ask lots of questions about how things are done, how to get the assistance that you need and how to plan for your child’s future and begin designing a plan for your child’s success early on.