Families that are impacted by special needs and disabilities often find themselves living from emergency to emergency. Parents are living in survival mode - going from a surgery to finding a camp to micro-managing school personnel to trying to take care of the other kids to trying to find adapted sports to spending time looking for qualified caregivers, all while trying to work, be a spouse, and not lose themselves and their own identity amid special needs parenting. It’s not a bad life. It can just be tough when you are navigating it on your own. And it seems the older your child gets, the smaller your social circles become.
That’s why Together We Care was started in 2021 - to assist families in navigating the special needs parenting journey from cradle to grave. One of the biggest hurdles that we often help families with is what to do when their child graduates from high school. The easy answer is - start planning for graduation as soon as your child enters 9th grade.
There are resources that already exist to help you in the journey if you know how to get them and how to utilize them to get the maximum benefit! Once your child enters high school, you want to first make sure you understand the benefits you have available to you through the public school system. Then, you add resources from Family Support Programs, GA Vocational Rehabilitation Services, and the NOW/COMP waiver.
Public School Resources
● Parent Mentor - each school district has a parent mentor who can help you understand resources, your IEP, your parent rights, and all the supports that are available through special education services.
● Look for an educational advocate - many people think that advocates are expensive attorneys, but there are more options. A family friend who has sat through IEPs can be an advocate. An advocate doesn’t have to be paid or trained. They just have to know how to translate the language of the IEP so that you understand it, and they are there to help you know what is appropriate to ask for.
● Ask for additional supports such as behavior, speech, occupational therapy, and physical therapy if these are appropriate for your child.
● Take your time! Students in special education can stay in school until they are 22 years old. Don’t rush the high school process. It’s okay if they fail a class or two and take a little longer to graduate. Allow them to take as many electives as possible to help them discover who they are and things they might like to do after high school.
● Get involved in extracurricular activities and ask the hard questions about how your child can be included in various activities with neurotypical students.
Family Support Funding
Family Support is a Medicaid program that is not an entitlement program, meaning that there are no income restrictions to qualify. Your child just needs proof of a diagnosed disability to qualify. The agency where you apply for this funding depends on the county where you live. You can find your assigned agency here - https://dbhdd.georgia.gov/be-compassionate/home-services/family-support-services. Once you know your county provider, contact them to learn about their intake process and how to apply. These funds can provide $3000/yr to pay for mentors, caregivers, camps, medical supplies, recreational activities, and a host of other things that you might need to help support your child throughout high school.
GA Vocational Rehabilitation Services
These services are sometimes referred to as GVRS, GVRA, VR, or voc rehab. This service provides additional support and opportunities for your child to receive support with finding a job. They offer a variety of services, including vocational summer experiences, creating resumes, interview skills, finding and getting jobs, providing a job coach to do on-the-job training, and transportation support. They will even help pay for college classes if your child chooses to pursue them after high school. Look at thinkcollege.net for adapted college programs in your area, and apply for services at https://referral.gvs.ga.gov/. Keep in mind that your child completes the application with your support, so the questions are for your child, not the parent.
NOW/COMP waiver
The New Options Waiver and the Comprehensive Waiver are two waivers that are funded by the Medicaid Department. When your child turns 18, it’s important to apply for Social Security Income (SSI) and social security disability insurance (SSDI/Medicaid). This is an entitlement program, so there are income limits associated with it. However, since most 18-year-olds who have special needs/disabilities are not working, are still in school, or do not yet have opportunities for employment, they typically qualify for this. Once they qualify, they are eligible for the NOW/COMP waiver. Even though they may not be Medicaid eligible until age 18, you can still apply and should apply for this no later than age 14 to get them on the waitlist. There are currently 7,000-8,000 people on the waitlist for this waiver, so apply early. The waiver is intended to take the place of the public school support. So whether your child graduates at 18 or 22, it is generally not available until after they are done with school. These funds can help you pay for day program services, individuals who can teach them how to learn household skills such as cooking, cleaning, and doing laundry, and individuals who can take them into the community to volunteer or just do leisure activities. These funds can also pay for transportation and long-term living plans, such as group homes or host home options. Many families do not even know that these things exist.
Luke’s story
One success story of many of our families is about Luke. Luke is a gentleman in his 30s with Cerebral Palsy. He has great family support, and his parents did an excellent job navigating school support and even got Luke into a college program where he was able to earn an English degree. And then, they got stuck. They couldn’t problem solve the barriers of transportation, gainful employment, and personal support other than family for Luke. They were referred to Together We Care after contacting Effective Students, a company focusing on executive function training. Once we met with the family, we walked them through getting family support funding, taught Luke some time management skills to better understand what his life goals were, and hired a facilitator to help him implement a plan to help him meet those goals. He began learning to navigate public transportation with his facilitator until he could get to the grocery store and his PT appointments independently. He also had a goal of exercising regularly and eating healthy. So we hired someone who could take him to the YMCA 3 days a week and work on grocery shopping, meal planning, and cooking a meal once a week for his family. Then, we were able to secure intensive family support funds so we could hire more people. Luke then began working on his interview skills, creating a resume, finding volunteer opportunities, and getting a job. We secured GVRA services to assist him with this process as well. Luke now works three days per week.
Additionally, we were able to advocate to get his NOW/COMP waiver approved, which gave us additional funding. We were also able to create two opportunities for Luke to lead as a camp counselor at a middle school camp and at an inclusive day camp with the YMCA last summer. Luke now enjoys working, attending a men’s bible study, going on adventures in the community like hiking, biking, going to museums, and visiting attractions. He is also involved in a community group with other individuals with disabilities. Luke will be speaking at this year’s Together Conference about giving people with disabilities an opportunity to lead in faith communities, and he has a goal of moving out of his parents’ home to live independently with roommates in the next 3-5 years.
Together We Care is here to help you understand and navigate all of these resources as well as support such as insurance benefits, financial management for your loved one, and estate planning. And the best part is that our services are free! At Together We Care, we develop a customized family plan that will help you cater these resources to the needs of your individual family and help you meet the goals for your child’s future to live, work, and play independently. Check out our website to learn more about how Together We Care desires to partner with you in your parenting journey and to schedule an appointment.
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