One of the biggest unknowns after learning your loved one has a special need, regardless of the diagnosis, is what does the future hold. This encompasses questions regarding general health, how do we prepare for the future, how do we afford it, how do we make sure our child gets everything he/she needs? This latter part is much more difficult to predict as there is a large disparity between children with special needs with regards to equipment and physical needs. In an attempt to help guide the thought process, Tadpole Adaptive will provide information to help navigate through and prepare for the future based upon our knowledge and experience.
What does the future hold? Honestly, we cannot predict it. But we will tell you that all of the joys far exceed the challenges. A child with special needs touches every individual that they come in contact with and leaves a lasting impression which changes each individual’s life.
What do I need to know about health? Health is a concern for both the parents and the child. It is important that parents develop a support network that is both social and emotionally supportive. There will be times that you need to talk to someone that is experiencing or has experienced the same situations. Support groups can be specific to a diagnosis, such as Families of Spinal Muscle Atrophy, or it can be a group of parents that meet in the waiting room while a child is in therapy. It is always best, although not always possible, if there is someone that can help with caring for a child for short periods of time so that parents/caregivers can have a break. Great places to look for additional help are local universities that offer Physical or Occupational Therapy programs. Respite care funds are able to be used to cover the cost for a non-family caregiver. A child’s health and prognosis are largely dependent upon the type of condition and whether it is a progressive or non-progressive condition. Examples of a progressive condition are Spinal Muscle Atrophy and Muscular Dystrophy. Cerebral Palsy is an example of a non-progressive condition; however complications can arise from abnormal muscle tone or seizures that may limit physical abilities over time. The most important thing to assist with maintaining good health is proper management and communication from everyone including parents, physicians, therapists and most importantly the child. A child with a physical impairment would benefit from receiving care from a comprehensive team including a primary care physician, a physical medicine and rehabilitation physician, a neurologist, an orthopedist, and therapists (occupational therapists, physical therapists and speech language pathologists). Additional team members may include (but are not limited to) a vision specialist, gastroenterologist, medical equipment suppliers, pulmonologist, special education teachers/school personnel, and providers of alternative therapies.
How do we prepare for the future and make sure our child gets everything he/she needs? One of the most important steps initially is begin receiving proper medical care and Early Intervention services which include therapies and a developmental specialist. It is also crucial to have an open chain of communication with all parties involved the child’s care including the child. Do not be afraid to ask questions about prognosis or what to expect in the future from physicians and therapists. Keep in mind; it may be hard at times to hear the answer. Therapy is a wonderful tool to enhance the child’s life through function. However, therapy is only as good as the support system beyond the therapy gym. Proper positioning equipment (if needed) and follow through are crucial for success. If the child is more physically involved, most likely there will be positioning equipment in their future. This is also referred to as Durable Medical Equipment (DME) under the insurance policy. When researching new insurance plans or reviewing your own, prior to submitting for DME, it is beneficial to know what the policy states and what type of funding cap or deductible is listed. A child with significant physical involvement may require a bath chair/toilet system, manual wheelchair/stroller, power wheelchair, communication device, special needs bed and positioning system, car seat, van with a lift, lift system for transfers, high-low chair, stander and gait trainer. Unfortunately, a child will require more than one of each of these items throughout their life due to growth and wear and tear. Due to the amount of equipment potentially required; it is always best to have a 6 month, 1 year, 3 year, 5 year, 10 year and 15 year plan where a family tries to plan what equipment is needed in the future and what is needed right now. It is also important to try to get items with the largest price tag, like a power wheelchair, funded through the insurance and use alternative or supplemental funding for a stroller or manual wheelchair for back-up. The planning for the future helps to organize thoughts into the one’s brain to prepare for possible future expenses as both the child and parent/caregiver age. This way when a van with a lift or a lift system at home is needed, it is not such a shock. With DME is important that certain continuums are followed when submitting for funding with equipment. For example, a stander should be requested from insurance prior to the gait trainer. If not insurance may question why a stander is needed if gait training is taking place and see it as a duplication of equipment. Therapeutic equipment is a process and it is important that all equipment should be recommended under a licensed therapist’s and physician’s guidance that have had experience with DME.
By now, you are probably thinking - How will we afford it? The first step is to visit the Family Financial Advocacy department or Social Work/Family Care Coordinators at the hospital where a child receives the majority of their services. These professionals are an invaluable tool in navigating the world of Medicaid applications and private insurance. They also have knowledge of community resources and funds available to assist with financial planning and paying for needed services. Be sure to ask about waiver programs, what they cover and how long the wait list is. There are also special state funded programs that a family may be eligible for through the Early Periodic Screening, Diagnosis, and Treatment (EPSDT) Program. This is program that is designed to help children under the age of 21 receive additional support and services. It is a division of the state Medicaid program. Additional support is often available through the local branch of the United Way, the Kiwanis Club, Knights of Columbus, and Lions Club organizations. The United Healthcare Children’s Foundation offers grants to assist individuals with private insurance to further meet funding needs for equipment and therapy. Holding a fundraiser and forming a Special Needs Trust is a great way to save funds for future needs. A note of caution though, please consult an attorney who specifically forms these trusts as there are special rules that must be followed prior to holding the fundraiser. Failure to do so properly may impact a child’s ability to receive services through federal and state funded programs. The care coordinators at the hospital most likely have a list of attorneys that provide the service. Tadpole Adaptive has recognized that insurance has its limits with regards to what it will fund and has set up a registry for necessary items that family, friends and organizations can contribute. It is a great option to tell family members about around Christmas and birthdays. Please click on the following link to learn more about the registry.
At the beginning we mentioned that the intention of the article is to be informative and help guide the thought process. Please keep in mind that this is a very brief synopsis and is not inclusive of everything for the future. It is a summary of key points from many conversations with families while completing evaluations for DME that has been shortened for easy reading. If there are any questions, please do not hesitate to contact Tadpole Adaptive for assistance.