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

 

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

By Annette Hines Author of

Butterflies and Second Chances: A Mom’s Memoir of Love and Loss

Special Needs Kids

For most families and disabled adults this journey 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 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:

  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.

  1. 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.

  1. 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.

  1. 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.

  1. 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.

  1. 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. 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 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. 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.

  1. 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.

  1. Learn to recognize when the conflict has become threatening and you are out of your depth.
    1. Get a lawyer: Finding a lawyer who knows his or her way around your legal issue is key. Under some circumstances, the disabled person or their family member may be entitled to free legal counsel. Do not sign anything, or in some cases, continue to make statements until you have consulted with counsel. Once your statements are on the record, it is difficult to unwind them if they are not accurate.

    2. Gather your supports: outside or second opinions can be very helpful when conflict arises.

    3. Gather documentation: bring your journal, test results, clinic visit notes, teacher observations, medicine administration journals and any other documentation that could prove helpful.

    4. Watch your communication: People under this type of stress may not think clearly and may not understand all the proceedings. You may want to lash out and be very aggressive. 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. 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 family member.

 

Annette Hines, Esq. is the author of Butterflies and Second Chances: A Mom’s Memoir of Love and Loss. She is a powerhouse advocate for the special needs community. 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. This deep understanding of special needs fuels her passion for quality special needs planning and drives her dedication to the practice. For more information, please visit, https://specialneedscompanies.com/ and connect with her on Facebook, @SpecialNeedsLawGroup.

 

 

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. Regardless, I only recommend products or services I use personally and believe will add value to my readers. 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."

Comments

  1. I have been an advocate for my mom for several years now. Great post!

  2. Sandy Klocinski says:

    My husband was diagnosed with ALS in February of 2016. He passed away in July of 2016. Those were the hardest months of my life, watching him slowly losing the ability to do things. God bless all the caretakers out there

  3. Dana Rodriguez says:

    This is a great post. I haven’t had to be a caretaker myself but I admire those that do.

  4. Thanks for the great article.

  5. Christina A. says:

    I love these tips! I don’t have a special needs person in my family but my neighbor’s daughter has special needs and we are always trying to help and support them in any way that we possibly can!

  6. I always have a big heart for special needs people and support them whenever and however I can.

  7. Arlene Mccurdy says:

    be kind many blessings

  8. paula peterson says:

    I found this so article so helpful. The daily goals and weekly goals is gonna help me a lot, thank you for sharing.

  9. Antoinette M says:

    Thank you for this post. Sounds like a wonderful book to read.

  10. Tamra Phelps says:

    One thing I’ve learned over the years is you cannot let up. Keep pushing for the person with special needs to get what they need and deserve. Don’t just trust those in charge to do what’s necessary.

  11. Thanks for this very helpful post. I will share this with my friend who has a special needs child.

  12. Excellent advice. Wish my sister had had this 40 years ago when her daughter was born.

  13. Thanks for the great advice! At some point in our lives, many of us will have to be an advocate for someone we love.

  14. Judy Metcalf says:

    Great post, Thank you. I have a niece with special needs. I will pass this on.

  15. Denise Low says:

    Thank you for the wonderful post. I have watched my parents lose their battles and it is so heartbreaking to watch this happen.

  16. sheila ressel says:

    Great information to know. This really helps to be a better advocate for your loved one.

  17. Deb Pelletier says:

    care gives need all the help they can get.

  18. Wonderful advice for everyone who loves someone with special needs.

  19. These are useful tips. And we should remember that there is a broad definition to the word ‘disability’.

  20. These are all great points well taken

  21. My 6 year old daughter went into school as developmentally delayed. She had some physical challenges. Although I was her biggest advocate, I still hired an IEP advocate for meetings. It really helped in making sure she got all the services she was entiled to.

  22. I think this type of material is important for everyone to read and have the knowledge. It’s better to be prepared for any possible future needs than to not even know where to begin or how to help.

  23. Minta Boggs says:

    Sounds like a great read. and so many useful tips to help

  24. Wendy Pence says:

    These are really great tips! 🙂

  25. Judy Thomas says:

    Awesome post! Thank you for sharing it.

  26. Dorothy Boucher says:

    I think these are good tips , I know my niece daughter has special needs and she is always working so hard to maintain order in her home, life, her child life.its not easy.
    @tisonlyme143

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