(cont'd for the severely disabled child especially)
- While you are waiting for DDA services to begin, you can apply for SSI or SSDI, Food Stamps, and contact the various support organizations in your area.
- Each year after DDA services begin, you must authorize DDA to provide services, access medical records, etc. to best attain needed supports and services for your child.
- It is not wise to terminate DDA services. One year you may need several services and resources, other years you may not. However, you never want to be without tapping into DDA’s resources and starting all over on the waiting list.
- Typically, DDA will provide services to the child throughout his or her life. This means he or she will not have to reapply when he or she becomes an adult and needs adult disability services.
- Each year you will sit down with DDA and write a Plan of Care for your child. This is the list of supports and services your child or family will need for the year.
- Understand that DDA is the regulating agency. DDA may hire service providers to case manage your child/family at no cost to you or your child. In many states, this service is provided by “Service Coordinators.” These individuals are trained to coordinate all the services for your child/family based on the primary needs of the child. He or she should always advocate for the child as well. The Service Coordinator should always respect the parent’s rights as well and not force his or her will for the child.
- You can always ask for a Service Coordinator to be removed from case managing your child and request another Service Coordinator. It is not wise to live without a Service Coordinator in your child’s life. A good Service Coordinator should make things happen for your child in a timely fashion and take that bureaucratic (Goliath) stress off you.
- Your child is eligible for DDA services at any age with a developmental disability. Developmental disabilities cause problems with major life activities such as language, mobility, learning, self-help, and independent living. Developmental disabilities begin anytime during development up to 22 years of age and usually last throughout a person’s lifetime. (i.e. Cerebral Palsey, Autism, Lead Paint Poisoning, Torretts Syndrome, Mental Retardation, Traumatic Brain Injuries stemming from car accidents, etc.).
- It is wise to connect to an advocacy support organization in your area. While we are learning to conquer Goliath in this New Year, we sometimes need the full armor of protection to conquer that giant of red-tape and bureaucracy that causes hindrances for the child with special needs. Having said that, an experienced advocate will know how to cut through the red-tape and get the services and/or resources your child/family needs with little to no stress on you. That advocate will teach you the way so that you are armed with knowledge that leads to success and peace of mind.
- Peer support is crucial to staying patient and peaceful. Be wise and connect with a peer who understands the emotional trials and tribulations of parenting a child with special needs. You are not alone and God has not forsaken you.
- It is wise and comforting for church outreach ministries to include coping and management strategies for the special needs mother, sister, aunt, uncle, grandparent, etc. at woman and men’s ministry functions, etc.
- Be a good listener! Parents are naturally sensitive about their children and especially the special needs child. However, practice listening to the message and check in with the Lord before going to battle …
- Pick and choose the battles very carefully, too. There will be many. How will the battle affect your child’s success in the future. Some trials and tribulations are just that. Exercise wisdom and stay in prayer and guidance for stronger discernment.
o Be realistic in what you are asking the school to provide for your child;
o Avoid being angry with the school when the responsibility to perform a task was yours, but you neglected it. For example, did you forget to call the vendor and check on the adaptations to the wheelchair? Did you skip the regular PTA meeting? God watches over all the earth and He never slumbers.
o Practice being humble more often and trust your mother’s instinct always.
o Never fear when it is time to advocate for the best interest of your special needs child.
Every disease, syndrome, illness, etc. has a support organization and parent resources and chances are, there is at least one online in your area. Take the time to connect with that organization. Make friends with other parents. Doing so can make the difference between a raging storm and peace of mind.
******
Visit the National Alliance on Mental Illness at
www.nami.org Visit Children and Adult with Attention Deficit Hyperactivity Disorder at
www.CHADD.org Visit Attention Deficit Disorder at
www.CHADD Visit the National Council on Disability at
www.ncd.gov Visit the National Association of Autism at
www.nationalassociationautism.org Visit the National Association of Retarded Citizens at
www.thearc.org Visit the Parents Place of Maryland at
www.ppmd.org Visit the South Carolina Family Resource Center for Disabilities & Special Needs at
www.frcdsn.org If you live outside Maryland and South Carolina?
Visit the Technical Assistance Alliance of Parent Centers at
www.taalliance.org and link to disability resource organizations in your state including assistance with the IEP mandated by IDEA.
You can always contact your state governor's office or website for contact information for Developmental Disability Administration in your area. You can also always contact your state law school for contact information for attorneys specializing in special education and/or disability law. Each state should have a disability law center that can handle basic IEP issues.
To God be the glory for the light and omnipresence!
Passing the peace,
(cont'd)
Posted By: agnes levine
Monday, September 19th 2011 at 1:30PM
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