Such big problems...such little resources. What to do?

_____Hello readers! Once again, you decide what I provide. I asked for topics and one was to address resources for children sicklers. As well as legal “adult” sicklers who can’t provide for themselves but aren’t allowed to use their parent’s insurance. Plus adult sickler’s resources when it becomes difficult to maintain a job or parents who may lose jobs for missing work due to caring for their child with SCD. Ok so lets break them down one by one.
_____For sicklers under the age of 18: First off parents/guardians should be looking into some sort of insurance (some is better than none) but specifically a PPO over an HMO. What’s the difference you may ask? Well, an HMO is a Health Maintenance Organization which is moreso geared toward people without illnesses but need annual check ups or get the common cold, required shots etc; but, you’re restricted to the people, places, and resources that they list. On the other hand a PPO is a Preferred Provider Organization and is more suitable for people who may have to be more acquainted with doctors and hospital staff. They’ll cover up to about 80% of expenses and allow for you to choose who you want to see (some companies limit but generally its choice of the insured). Since sickle cell is a blood disease, you’ll want your child to see a hematologist (blood diseases doctor) who is considered a specialist. Sickle cell also causes a lot of other complications that call for other types of specialists (cardiologists-heart doctor, pulmonary specialists-lung doctor, etc.); PPO’s allow room for this.
_____As for camps that have staff trained in caring for sicklers, I can not speak on behalf of every state or even the state of FL but I do know of camp Boggy Creek. Camp Boggy Creek is a summer camp program that provides the pleasantries children without illnesses enjoy but with the medical staff that can handle situations such as emergencies. This camp holds sessions reserved for specific diseases and one session is for sickle cell, its held in northern FL. To find out the resources (which I must admit are scarce) just search your city or state online. Each region and usually each county has an association for sickle cell (under the SCDAA-Sickle Cell Disease Association of America, the national association), so if searched it will provide information on what is available including a calendar of events. If your county or nearest regional association isn’t active, I suggest your initiative be put into gear. Get proactive, start an association, plan events, put on fundraisers (bake cells, benefit concerts, talent shows, etc.), anything that can provide an outlet, a support system and a safety net for patients and their families. An alternative is to check with your child’s hematologist. Many of these specialists are aware of programs being held, organizations, seminars, conferences and other resources because its their specialty and field.
_____I myself have been put in that sticky situation of being between child and adult. Still child because I wasn’t able to provide for myself but seen as adult legally because I was 18. I could not afford my own expenses but was not allowed on my parents insurance…well that not exactly the case. If a cardholder calls their insurance and specifically notify them to place the 18 year old “child” on their insurance, they will be covered. Once I turned 18 I was automatically booted off of my parent’s insurance but the parent as the cardholder requested I stay under coverage. There are also resources provided by the government such as SSI (social security income) and disability. The two are very similar and provide a bit of financial support for both minors and adults suffering from illness to help cover regular and health expenses. Once in college, I also suggest the newly adult sickler to get acquainted with OSD (Office for Students with Disabilities). This sector of the school provides that link between student, doctor and professor. Once a college student, parents are no longer there to play the role of an advocate. So when those hospital visits and missing classes due to pain come around, OSD can help with this as well as provide a notetaker, and an extended number of allowed absences amongst other requests.
_____So as I imagine, most to all parents are willing to die and kill for their offspring. In the event a person’s child gets sick, a job is no longer priority—their child’s well being is. Since hospital stays are a harsh and common realty in a sicklers life, their parents spend many nights on hospital visitor cots or recliner chairs causing a lot of missed days of work. Unfortunately, I do not know of a resource for this except for being upfront. As early as the interviewing process, let your boss know that you will try not to miss work but if your child falls ill they will become priority and let them know your child has an illness. I’m not saying walk off of your job for minor pain crisis’; but, in the event of extra long stays or surgeries or complications this can become a reality.
_____Last but not least, the question of what to do when you’re an adult sickler and cant support yourself… First off, this is a hard pill to swallow and takes a toll on how a sickler may feel about their purpose because their independence is compromised. The normal 9 to 5 may not be conducive to the lifestyle of the average sickler. Sometimes a wrench is thrown into our plan and can result in being late from work, missing work, or not performing at full/maximum potential at ALL times. A lot of times (unfortunately) we may not even get hired because we’re seen as a liability. Of course a place can not use this officially as their reason for not hiring because its illegal due to the Disability Act; that says businesses can’t discriminate based on that and must provide reasonable accommodations. My recommendation: apply for jobs anyway. Life can’t stop because of the prospect of failure (failure lies within not trying). Plus I suggest being creative. Use what you know how to do to support yourself. Think of alternative sectors of your chosen profession that can be paralleled with living with these uncontrollable interruptions and bouts of sickness. For example, you may not be able to be a classroom teacher but maybe you can teach online classes. Same profession, different angle. Also, utilize resources until they are all exhausted. The combination of these things are not foolproof but being positive and prayer both have power. Remember that and good luck! Signing off 

-Sickle Cell Soldier