Family Advocacy—Helping Families Apply for Waivers
|Ms. Lara is a long-time volunteer advocate working with individuals with developmental disabilities and their families. During the past year alone, she has assisted over 100 families apply for waiver services. Ms. Lara has two sons with autism. |
In assisting individuals and families, Keri’s goal is to help individuals with developmental disabilities develop person-centered life plans and secure DBHDD financial assistance to help realize these plans. Ultimately the goal is to help individuals with DD increase self-determination and improve independence.
Keri commented that there is a lot of misinformation about waivers. An example is the misconception that families in need must be poor in order to qualify for a waiver.
Keri encourages primary caregivers to make a plan and get organized early. She assists primary caregivers in creating a large notebook of important records and documents that evidence the individual’s needs. The idea is to have a portable, comprehensive, and up-to-date account of the individual’s life. The life notebook becomes essential for accessing information needed for waiver applications, emergencies, etc. Specific information that should be in the notebook includes records of medical events, documentation of diagnosis, records of professional visits—doctor, dentist, counselor, etc., record of personal accidents, injuries, and illnesses, information about needs related to feeling safe and secure, lists of medicines, and service provider documentation. Creating a life notebook can be very stressful for caregivers so helping with this task is an important advocacy role.
Keri discussed the differences between the NOW and COMP waivers. The New Options Waiver (NOW) provides up to $25,000 in annual support for individuals who do not need 24 hour care. Comprehensive Support Waiver (COMP) provides support greater than $25,000 annually. The COMP waiver is also used for individuals transitioning from institutions to the community. Individuals interested in applying for a waiver need to contact the Region 6 office.
In the waiver application, it is helpful to include support letters from teachers, friends, pastors, doctors, local officials, pharmacists, etc. This helps strengthen the individual’s statement of need.
When seeking services for an individual, caregivers are often told that services are not available. Keri encourages caregivers to respond by saying “Thank you. Can you please put that in writing for me, so that I can further research and understand where I need to go from here?”
Keri shared that caregivers should reach out to their communities. The Georgia Council on Developmental Disabilities, Parent2Parent of Georgia, support groups, and community groups may be helpful.
Beverly Garland, board member, shared her son’s notebook with the board. Her son’s notebook contains many photos, documentation of medical needs, care provider information, (doctors, dentists, etc.), diagnoses documents, long term goals, treatment plans, and family traditions that help her son feel secure.
Keri was enthusiastically thanked by the board for her excellent presentation. Beverly was thanked for sharing her son’s life notebook.
Contact information for Keri is 706-977-9413 or 706-507-0083 and email@example.com.