For most families, the journey of taking care of a child with special needs is “a marathon, not a sprint.” The emphasis must be on taking care of yourself and your family in order to take on the long-term role of advocate. Don’t underestimate the value of getting some exercise, having a routine, eating well, laughing, taking deep breaths to relax, and surrounding yourself with positive people. This can be hard to do sometimes when facing so many challenges. Also, remember that each member of a family is important and should have their needs valued and met.
While important for anyone, these “little things” are actually critical for those of us who struggle to find a normal life and some balance while dealing with disability. Those little things can also be the most difficult to obtain for any family affected by disability. Don’t get lost in the fight for disability, school services or insurance coverage. Long-term stress from a conflict driven life can have a huge impact on the health of a caregiver/advocate.
After more than two decades as a professional and living the life as a special needs caregiver personally as well, I’d like to share some things I’ve learned to help you become a great advocate while also maintaining some balance in your life:
1. Separate out the urgent from the non-urgent issues.
Write down daily goals and weekly goals and link those with appointments and tasks that are already set up.
2. Gather information.
Do go on the web to search for information but limit your time online. Disability can be very isolating and there is a tendency with the isolation to be online for literally hours and hours to research everything that has ever been published. Research your current issues, but keep a balance. Don’t become overwhelmed.
Write a brief summary of the issue you are facing. It should be concise and without emotion. If the provider is open to it, then share that summary in advance. If not, use it for your own notes and to be prepared for your upcoming meeting or communication.
3. Become the expert.
Most families and individuals with disabilities are going to interact with many professionals, caregivers, educators, clinicians, etc. in their lives. In other words, there is an individualized team for every disabled person and their family. There is not always an opportunity for each member of the team to consult with others on the team. Maybe team members do not agree on goals or action steps. This puts you, the individual/advocate, right in the middle.
Document steps you have taken and results from those actions. If you have tried a certain therapy or medication and it did not have a great outcome, then write it down. If you have applied for a certain benefit in the past and were denied, document that as well.
When you work with the various members of your team, you will develop credibility if you are organized and can summarize issues quickly. Many advocates can appear as a drowning person, always in a panic and grabbing at anything nearby to hold onto in attempt to save themselves.
4. Pull together a trusted team.
This will take some time. Many therapists, schools, service providers will not be a good match the first time out. Even when you do find good fits, people change jobs, an individual’s needs change and benefits rules change as well. It is an ever-changing landscape and hard to keep up. However, knowing that plans may change, a great advocate will always have a plan. Find the best team for your current plan.
5. Learn to prioritize.
Once you have your goals listed, team organized, and have done your research, now you can prioritize an action plan to address and advocate for certain issues. You do not have to deal with all the issues all the time. It is likely that only a very few decisions actually have to be made immediately.
6. Establish good communication.
For most disabled individuals and their families, as advocates they do need to be assertive; providers often do not agree, sometimes do not respond, and sometimes do not do what you need to have done in a timely manner. Assertiveness can mean getting better results or outcomes because that means you actually go after what you need. Many providers are underfunded, understaffed, and in general, just overwhelmed with all the individuals they are meant to care for.
But, when advocates become frustrated, this assertiveness can become abusive and this abuse is often misdirected. It is understandable that families and individuals get frustrated, but be cautious. These same people who frustrate you now are the ones who ultimately will be there to help you. In fact, even if they are underperforming, they may be all you will get to assist you in any given area.
Unfortunately, sometimes even advocates with the best intentions can bring negative attention to themselves or their family. Because you are the hub of the team, you become the central source, or “gatekeeper”, of all information. It may not always be possible to have the team speak to each other in a group format. Therefore, your communication must be precise, with as little emotion as possible and succinctly documented.
7. Share the advocate role!
Even if you don’t see the immediate value in these relationships, it is very important that there are many people who know you and your family and feel invested in your care. Once you find someone who is good and willing to advocate for the disabled individual, enlist them and thank them for their assistance.
8. Learn to recognize when the conflict has become threatening and you are out of your depth.
Finally, be thoughtful about the long-term value of developing relationships with physicians, providers, schools, case workers and others. Nurture these relationships. Of course, you have legal rights, but remember, these rights are moderated by people. It is always better if plans are a team decision rather than a reluctant response to a demand. Give the team the benefit of the doubt and believe that everyone is working hard and trying their best. Being patient, thoughtful, and encouraging in those relationships with the people and healthcare providers (who are often the source of frustration and bad news!) is a challenge but is so critically important in the success of your advocacy for your special needs child.