Case Management, Guardianship Support, Life Care Plan, Medical Consultation

Parents of a Child with a Disability Make Natural Advocates

 June 14, 2017

By  Deborah L Weiner Katz, OTR/L, CCM, CLCP

The medical professionals at AdvancedRM are employed as expert witnesses and care managers. Both are roles that require years of education. Advocacy, however, is a role that we are happy to share with everyone. In our work with children with physical and developmental disabilities or health impairments, we actively encourage parents to become advocates.

We always welcome allies but that is not the real reason we encourage advocacy. The truth is that school districts still have a ways to go when it comes to special education services. Certain strides of progress have been made but resources are still limited. These services cost money which means you may be facing an uphill battle when it comes to procuring them for your child.

Allow us to help you become familiar with advocacy, by sharing the most essential facts:

What is an advocate?

If you support, defend or argue for a cause, you are an advocate. Anyone who intercedes or pleads on another’s behalf is an advocate. Lawyers, who we work with on a regular basis, are advocates.  As care managers, we support, help, assist and speak on behalf of others. We are advocates.

What do advocates do?

While advocacy may not require our level of expertise, we expect you to become experts on behalf of your children.  Advocates hoard information. When it comes to your own child, there will never be enough to learn. Facts come in handy when disputes arise with school officials.

Speaking of school officials, advocates will want to know as much as possible about their local school district. Districts must know what your child is entitled to, according to the law. Know your rights, your child’s rights and consult a lawyer to help with both.

Get it in writing. Test scores, written objectives and follow-up letters are just a few of the documents an advocate will keep on file. If you want something done, put it in writing. Create your own paper trail.

The rest comes down to attitude and determination. Ask questions. Become a problem-solver. Learn to negotiate. Being the best advocate should feel no different than being the best parent you can be.

How many different types of advocates are there?

As an advocate, you will meet others. For example, we are lay advocates. This means we use our knowledge and expertise to help parents like you. That knowledge extends to your legal rights and responsibilities. This means we can represent you in special education due process hearings.

Then, there are educational advocates. They attend IEP meetings and are responsible for evaluating your child and recommending services, supports and special education programs. Ideally, your child’s teachers see themselves as advocates, members of a team of special education providers.

Of course, none of these individuals has your child’s best interests at heart the way that you do. It all comes back to you, the natural advocate. So, that leaves one last question.

How do I become an advocate?

Begin with your primary objectives as a parent of a child with a disability. According to the law, you have the right to ensure that your child is provided with a “free appropriate public education that includes specially designed instruction to meet the (child’s) unique needs.

Next, you must develop a healthy working relationship with the school. Your child’s future depends on that level of cooperation.

Think of your child’s future. Specifically, what do you want for your child? If you have a vision of him or her as an independent adult, a self-sufficient member of society, then start developing a master plan. Long-term plans with clear goals are your responsibility.

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