Families who have private insurance must use that insurance first. Private insurance may offer more medical or therapy services than what your child may receive through your local school district. School services must meet an educational need. Keep in mind that these services offered through outside agencies are more medical in model than what you may receive at school. If your child becomes eligible for Medicaid services later, there is a program called HIPP, which may help cover the cost of your private insurance premiums.
Other resources can be found through the state of Texas. We suggest that you start at www.YourTexasBenefits.com. Go through the section “Should I apply?” to see what your loved one may be eligible for. You can also learn more about the various health care programs that are available in the “How to Get Help – Health Care” section of the website.
The Health & Human Services Commission (HHSC) has many programs to support the long-term care needs of children and adults with disabilities.
There is a new limited entitlement program called Community First Choice. This may be an option to receive limited personal attendant or habilitation services. These services will help the person with a disability with activities of daily living. A person must receive Medicaid to be eligible. Contact your Medicaid managed care organization to get the process started for these support services.
Medicaid Waiver programs are another key part of long term support for people with disabilities. There is a long interest list for some of the Medicaid waiver programs (8-10 years). These programs fund services and supports that allow people with disabilities to live at home instead of in a nursing home or an institution. They are called waivers because these programs “waive” off of institutional care. Eligibility is based on the child’s need for institutional care, not on the family’s income.
Even if your child or adult already has private health insurance or Medicaid, waiver programs can pay for other things, such as therapies, home aids and modifications, medications, respite care, attendant care, vocational support, day programs and more. Sign your child up as soon as possible with your local authority, or DADS. You can add your child’s name to more than one interest list. When your child’s name reaches the top of a list, you will be contacted. If your child or adult meets eligibility criteria, a case manager will meet with you and your child to develop a plan of care. You can switch to another program if your child’s name comes up on a different list. However, your child can only participate in one waiver program at a time. To understand the different waivers, this Comparison of Medicaid Waiver Programs is helpful.
Services in these programs can be provided by an agency, or you may choose the Consumer Directed Services (CDS) option. CDS allows the parent or the person with the disability to hire and manage the people who provide their services. CDS may seem like a lot of extra work, but it gives the family or individual greater control of schedules, training, and who comes into their home. A CDS agency manages the payroll services and provides lots of training and support to those who choose this option.
You may think, “I plan to take care of my child forever, so why would I need this?” Well, you never know what may happen. One day you may no longer be able to care for your child or adult with a disability. We don’t live forever. It is up to families to reach out to access supports whether natural or more formal through agencies. By doing so early, families can ensure that their children have the supports they need to be successful.
After making the difficult decision to medicate your child, with time and on occasions, old symptoms return or new ones appear. Once again, you’re faced with what felt like an already-made decision - to medicate higher or more, or not.