8 Ways to be a Great Advocate for Your Family Member With Special Needs

Once your statements are on the record, it is difficult to unwind them if they are not accurate.Gather your supports: outside or second opinions can be very helpful when conflict arises.Gather documentation: bring your journal, test results, clinic visit notes, teacher observations, medicine administration journals and any other documentation that could prove helpful.Watch your communication: People under this type of stress may not think clearly and may not understand all the proceedings. 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. In other words, there is an individualized team for every disabled person and their family. You do not have to deal with all the issues all the time. Write a brief summary of the issue you are facing. The emphasis must be on taking care of yourself and your family in order to take on the long-term role of advocate. If not, use it for your own notes and to be prepared for your upcoming meeting or communication.Become the expert.Most families and individuals with disabilities are going to interact with many professionals, caregivers, educators, clinicians, etc. However, knowing that plans may change, a great advocate will always have a plan. This deep understanding of special needs fuels her passion for quality special needs planning and drives her dedication to the practice. She is a powerhouse advocate for the special needs community. Of course, you have legal rights, but remember, these rights are moderated by people. It is likely that only a very few decisions actually have to be made immediately. If you have tried a certain therapy or medication and it did not have a great outcome, then write it down. It is an ever-changing landscape and hard to keep up. in their lives. 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. Gather information.Do go on the web to search for information but limit your time online. It is understandable that families and individuals get frustrated, but be cautious. Therefore, your communication must be precise, with as little emotion as possible and succinctly documented.Share the advocate role! In fact, even if they are under performing, 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. It should be concise and without emotion. 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. This can be hard to do sometimes when facing so many challenges. Because you are the hub of the team, you become the central source, or “gatekeeper”, of all information. For more information, please visit, https://specialneedscompanies.com/ and connect with her on Facebook, @SpecialNeedsLawGroup. Those little things can also be the most difficult to obtain for any family affected by disability. Don’t become overwhelmed. 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. Pull together a trusted team.This will take some time. 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. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.” 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 therapists, schools, service providers will not be a good match the first time out. Regardless, I only recommend products or services I use personally and believe will add value to my readers. Under some circumstances, the disabled person or their family member may be entitled to free legal counsel.   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. Research your current issues, but keep a balance. Even when you do find good fits, people change jobs, an individual’s needs change and benefits rules change as well. Nurture these relationships.  Annette Hines, Esq. Assertiveness can mean getting better results or outcomes because that means you actually go after what you need. 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 family member. Not only has she founded the Special Needs Law Group of Massachusetts, PC, specializing in special needs estate panning, where special needs families compromise 80 percent of the firm’s clients, Hines brings personal experience with special needs to her practice, as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. However, maintaining civility and calm is of utmost importance when this level of conflict has arisen.Finally, be thoughtful about the long-term value of developing relationships with physicians, providers, schools, case workers and others. Don’t get lost in the fight for disability, school services or insurance coverage. It is always better if plans are a team decision rather than a reluctant response to a demand. Once you find someone who is good and willing to advocate for the disabled individual, enlist them and thank them for their assistance.Learn to recognize when the conflict has become threatening and you are out of your depth.Get a lawyer: Finding a lawyer who knows his or her way around your legal issue is key. 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. You may want to lash out and be very aggressive. If the provider is open to it, then share that summary in advance. Find the best team for your current plan.Learn to prioritize. Do not sign anything, or in some cases, continue to make statements until you have consulted with counsel. It may not always be possible to have the team speak to each other in a group format. is the author of Butterflies and Second Chances: A Mom’s Memoir of Love and Loss. There is not always an opportunity for each member of the team to consult with others on the team. Give the team the benefit of the doubt and believe that everyone is working hard and trying their best. This puts you, the individual/advocate, right in the middle.Document steps you have taken and results from those actions. These same people who frustrate you now are the ones who ultimately will be there to help you. Maybe team members do not agree on goals or action steps. 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 this life 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: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.   Disclosure of Material Connection: Some of the links in the post above are “affiliate links.” This means if you click on the link and purchase the item, I will receive an affiliate commission. You are here: Home / Guest Post / 8 Ways to be a Great Advocate for Your Family Member With Special Needs8 Ways to be a Great Advocate for Your Family Member With Special NeedsMay 24, 2019 by Guest Post Leave a Comment 8 Ways to be a Great Advocate for Your Family Member With Special NeedsBy Annette Hines Author of Butterflies and Second Chances: A Mom’s Memoir of Love and LossFor most families and disabled adults this journey is “a marathon, not a sprint”. Establish good communication.For most special needs 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.