ABCs for Life Success

ABCs for Life Success
Education Experts Committed to Extraordinary Service to Families and Educators

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Sunday, January 15, 2012

Featured Family Journey: Trying to make a program better for son with Autism

Featured Family Journey

As part of this blog, I decided to interview some of the families we serve at ABCs for Life Success.

Their journeys are so instructive, and inspirational, I hope that families and educators will benefit. 

The first mom I interviewed is an extraordinary parent.  Despite grave concerns about her son's placement, she agreed to try it out.  Her son, now an 11 year old with Autism, has always attended a full time special education program with fairly intensive related services.  You will hear her talk about his initial diagnosis to today's breakthroughs, and how she moved from scared and upset to an in-action advocate. 

Here is the interview:

She discusses how professionals, family, and experts helped her along the way, and her dreams and goals for her child's future.  I don't think you will regret spending 41 minutes listening to her talk with me.

She wrote to me after listening to her interview.  She wanted to emphasize how confusing it is to get different advice from different experts.  Unfortunately, I have heard that from parents many times over the years.  She wrote, "in my quest (more like desperation) to find an answer I sought answers anywhere and everywhere. I used a genetic therapist who put (my son) on various medications and I "saw" improvement so I continued to use them. It was only in recent months that my journey took me to another specialist that questioned the medications and after 2.5 years decided to discontinue them.

As a parent I want to do what I can to give my child that extra boost and some times I don't always make the right decision. I feel like I am at a lost because this is uncharted territory for me -in all of my years of education and my work experience I don't have the answer and seek help anywhere I can.  I've beat myself up because I was reluctant to give him the medication because as a Dr - their oath is to do "no harm" but I realize everyone has an agenda".
I hope you will take time to comment and tell me if listening to this interview somehow made a difference for you, or helped in your advocacy journey. 

Monday, January 2, 2012

Parent Counseling and Training:  Should this be a related service on your child’s IEP?
By Michelle R. Davis, M. Ed.,
What is parent counseling and training?
Parent counseling and training is defined as a related service under IDEA.  Here is the definition:
(i) Parent counseling and training means assisting parents in understanding the special needs of their child;
(ii) Providing parents with information about child development; and
(iii) Helping parents to acquire the necessary skills that will allow them to support the implementation of their child's IEP or IFSP”
What is a related service?
A related service is a service that a child needs to receive benefit from her special education program. 
What is ‘benefit’? How is it defined?  How do I know if my child is receiving benefit?
If the child is progressing, in both the curriculum and on her IEP goals, then the child can be said to be benefitting from her special education program.  Benefit can be discussed as making progress that is meaningful to the child, and allows the child to potentially be an independent and functioning adult.  In my experience, the parent and the school team often view ‘meaningful progress’ through different lenses.  Parents often believe the child should be performing at a higher level than what is expected at school.  Parents often complain that the IEP progress reports state that a child is making progress, when the parent does not see the child obtaining independent skills, for example.  So, the question of whether a child is benefitting from her special education program is a critical yet complex question.  It sometimes must be decided in a due process hearing or by other dispute, as this is a foundation of a free appropriate public education for a child with a disability.  Grades should not be the only determination of benefit, and the team should consider factors such as medication or tutoring, or other supports provided by the parents to support the child’s progress in the special education program.

How is parent counseling and training delivered?
However accomplishes the above defined outcomes for the service.  It should be convenient and take advantage of technology.  Examples of skills learned could include:
1-Understanding of each part of the IEP, the legal definition of the purpose of the parts, how they interact together to deliver a FAPE in the LRE, what services and accommodations are being provided.
2-Being able to use before, during and after meetings the language that is most useful to the MDT in determining the child’s needs and implementing the IEP. 
3—To know where to find and articulate procedural safeguards and the importance of each.
4—To effectively communicate with the members of the mdt and all professionals.
5—To effectively participate in the evaluation of the child.
6—To effectively collaborate with the school team.
7—To effectively navigate a dispute option.
8—To participate in data collection and analysis to determine how or if the child is responding to interventions. 
Parent counseling and training can also be benficial:
·       To promote parent to parent networking and information sharing
·       To support the implementation of the IEP after school hours, or to support Extended Day or Extended School Year Services
·       To provide connections to community resources.
·       To gather information about data collection.
·       To learn about special factors such as assistive technology, behavior intervention plans, or communication needs
Who provides parent counseling and training?
Whichever provider or providers can accomplish the stated outcomes of the service including helping the parents understand child development, and acquiring the skills needed for the parents to support the implementation of the IEP.  So, this should be individualized.  For some students, the service provider may be different for different purposes.  The multidisciplinary team determines the service and who will provide the service.
How does parent counseling and training get put into the IEP?
1.      Assure there is an evaluation which recommends parent counseling and training.
2.     Write a letter to the school and ask for parent counseling and training to be added to your child’s IEP.  Reference the evaluation in your letter.  If there is no evaluation, then request whatever evaluation or assessment is needed for the team to determine that your child needs parent counseling and training in her IEP. 
3.     Gather evidence that the child is not benefitting from the special education program, so that she needs the parent counseling and training service added to the IEP.
4.     Prepare a list of requests for parent counseling and training, including:  who should deliver, how often, where, how, and why. 
5.     Write a parent input statement, that will go into the IEP, of your concerns for your child and how you believe the program can be improved, being sure to include a statement that parent counseling and training is needed in the IEP.
6.     Provide all documentation you want the team to consider before the meeting.  Attend the IEP meeting and make the same requests in person as in writing, read from your letter and input statement. 
7.     During or after the meeting, be clear about whether the team agreed to provide the service, and why or why not. 
8.     After the meeting, review and respond to the prior written notice about your request. 
9.     If the team has agreed, start the service, documenting your participation.  If the team has not agreed, understand your dispute options.
10.  Consider hiring an expert to privately provide the service, and seek reimbursement for it. 
Does the service have to be delivered (by law)?
Yes.  If the service is in the IEP or 504 plan, it must be provided.
What if the school agrees to provide parent counseling and training, but then fails to?
The child may be entitled to compensatory education services.  Compensatory education services are designed to compensate for the harm caused to the child from the lack of provision of services.  This can be in the form of money, services, or other compensation. 
What if the school team does not agree to add parent counseling and training to the IEP?
Finding out why the team did not agree is critical.  Then, take action that addresses the reason.  Possible reasons the team would not agree and possible solutions are:

Lack of knowledge of the service
Involving a supervisor or providing the team with resources. 
Child is already benefitting from special education program and does not qualify
Collect evidence, data, work samples, do observations, to document why you think the child should qualify. 
Or enter into a dispute option such as mediation.
The team has never done the service and does not know how.
Obtain the services privately and ask the school district for funding. Or, ask that the staff get training how to provide the service.
The team did not document a reason.
Issue a state complaint or letter to the supervisors to initiate an investigation into procedures.

What if the parent does not get along with the person assigned to do the parent counseling and training?
Parent counseling and training should not be forced on parents and the match should be carefully considered.  The parent should request a different provider or change the purpose of the service though the IEP team. 
Special Needs Advocacy Resource Book:  What you can do now to advocate for your exceptional child’s education.