An Introduction to Special Needs Financial Planning

We’ve been sharing a lot lately about cultivating robust supports around your family impacted by disability. Since financial planning is one part of that process — and an intimidating part for many people, indeed — we wanted to take a side step in this post to share a some very practical insights from a respected friend. The following article first appeared at the Thrivent blog on June 24, 2021. It is re-shared here with the permission of Alex Gonzalez, the author of the article and a current Board member here at Walk Right In Ministries. Please feel welcome to make an appointment with Alex if you have specific questions about your own financial planning process.


Raising a child with special needs can bring joy and challenges in equal measure. Alex Gonzalez and his wife, Simone, know this well because their oldest son, Jake, lives with autism and Asperger syndrome.

Alex sums up his experience as a parent and his guidance as a Thrivent financial consultant with this simple message: “Try not to go it alone.”

“It’s stressful when a parent receives a diagnosis that their child’s physical or cognitive challenges will continue for life,” he says. “It’s normal to feel anger and grief. My wife and I needed to adjust our thinking in those painful times.”

Thanks to a supportive school district and careful planning, at 26 years old, Jake is working full time and living independently. Here is what you can learn from the Gonzalez family.

Create a financial plan unique to your family.

It is common for parents to prioritize their child’s needs over their own, especially financially. Studies by the American College of Financial Services indicate that 90% of special needs and disability family members and caregivers admit that caring for their loved one is more important to them than planning for their own retirement. But it could be even more difficult to help your loved ones if your financial future is in jeopardy.

Start by mapping out your own long-term financial needs.

Alex recommends parents work with a financial professional to create a financial plan* for long-term clarity. “It’s like the scenario where you’re on an airplane and the flight attendant tells you to put on your oxygen mask first before helping your child,” he says. For example, “If you don’t have the right kind of disability income insurance and become disabled, you will have a harder time helping your disabled child.”

Update your retirement income plans to include your child’s needs.

Putting together a solid retirement plan is also vital. From calculating retirement income needs to setting strategies to optimize Social Security or other government benefits, there are many things to consider. “Parents realize that their retirement budget could have an extra line item for their child’s supplemental costs,” Alex says. For example, accounting for the expense of experiences or services that aren’t covered by government benefits such as transportation expenses (car, travel, etc.) or therapy that isn’t covered.

And making sure that your beneficiaries are in good order is critical. Alex tells of a young adult whose parents passed away after naming their son as beneficiary of their 401(k) retirement accounts. If they had a financial professional helping with their plans, the parents would likely have known such a decision would jeopardize their son’s ability to receive the need-based government assistance he qualified for. While a situation like this is able to be remedied, it would likely take time and resources to help ensure your wishes are carried out as you intended.

Leverage the tax-advantaged ABLE account.

What is an ABLE account? An ABLE account (Achieving a Better Life Experience Act) was established by Congress in 2014 and offers individuals whose disability began before age 26 a tax-advantaged way to save money without affecting their government benefits. 

The law was in response to a potential roadblock that families faced in the strict qualification rules for need-based government assistance. Assets in the child’s name must not exceed the threshold of eligibility to qualify for Supplemental Security Income (SSI), a federal program that provides money for food and housing; and Medicaid, a state and federal program that pays for medical expenses.

The list of ways ABLE accounts may be used includes:

  • Basic living expenses
  • Housing
  • Education and training
  • Transportation
  • Assistive technology
  • Financial management and legal fees

ABLE account earnings grow tax deferred, and withdrawals are free from income tax if used for qualified disability expenses. ABLE accounts are set up through a state or state agency that administers them.

Family members and others may contribute up to the maximum yearly limit of $15,000. Government benefits will not be affected if the account stays under a total of $100,000. Any funds remaining in the ABLE account at the beneficiary’s death may be required to repay government benefits received while the account was funded. 

Consider setting up a special needs trust for your child.

An irrevocable special needs trust is a more complex planning tool that allows you or loved ones to leave assets to your child without affecting the individual’s government assistance. There are two types of special needs trusts, commonly referred to as first-party and third-party trusts.

First-party special needs trust:

A first-party special needs trust is funded with assets from the disabled individual, such as from an inheritance in their name. At the individual’s death, proceeds in a first-party trust may be required to reimburse Social Security and Medicare for services received.

Third-party special needs trust:

A third-party special needs trust is funded with assets from other loved ones, such as with proceeds from a life insurance policy. No payback is required from a third-party trust at an individual’s death.

Funds in either type of special needs trust may be used for a wide variety of expenses, including:

  • Education
  • Travel and recreation
  • Assistive and electronic equipment and appliances
  • Companion assistants
  • Vehicles

Special needs trusts are meant to supplement but not replace benefits an individual receives, making it especially important that a trust be properly drafted to accomplish its goals of preserving benefits.

Find the support you need.

Every family needs support—both personal and professional. Your inner circle for your family’s journey may Include grandparents, siblings, aunts and uncles. You might also lean on friends, your community and parent support groups.

You also may need to call in experts as well. Depending on your child’s needs and age, seek support from:

  • Your local school district.
  • A disability consulting service that can advocate for you and your child.
  • Housing assistance for special needs adults.
  • Employment agencies that encourage independence.
  • A special needs tax advisor.
  • An attorney for necessary legal documents and trusts.
  • A financial professional to help you implement your long-term financial strategy.

“These are not easy conversations, but empathetic financial professionals can help facilitate them as part of a special needs financial plan,” Alex says.

Connect with a Thrivent financial professional to create a comprehensive financial strategy that considers the overall well-being of your family. They can also help you find advocates and legal advisors who can assist your family.


Click here for the WRIM profile on the Thrivent Choice catalogue.

Walk Right In Ministries is approved as a Thrivent Choice organization meaning that Thrivent clients can direct their Choice Dollars to WRIM. If you are a Thrivent member, would you consider WRIM the next time you are dedicating Choice Dollars? (Thrivent pays the processing fees so that 100% of every donation through Thrivent Choice goes to WRIM and to build faith and community with special needs families. WRIM is also eligible to receive grant funding.) Find our profile link here.

We would also appreciate very much if you would take just a moment to give WRIM an online recommendation in the Thrivent Choice catalogue. You can do that here

Resource Corner: Tools for a Listening Season

Hello, hello my friends! As we make the final stretch toward Christmas, I wanted to share some tips, tricks and listening tools that are helping me through exhaustion and loneliness. They might seem simple but they have been game changers for me.

Start your day with the Lord — through a worship playlist.

I have not been sleeping well. Families impacted by disability and other special needs will surely understand this. For the past couple weeks the glaring alarm clock has become the bane of my existence. When I succumb back into sleep (I’m trying to get up on the first alarm!), I’ve started to play my worship playlist so I wake up to it four minutes later. It has really helped me start the day in a better mood and grounds me into the day to come.

Upon listening to the songs on my list throughout my morning routine, I’m realizing how deeply personal the songs are to my prayer life and relationship with Christ. And in my relationships with others too. I’ve been praying about what has hurt me and what I take to the Lord every day.

I have searched for songs that speak into those things. I’m finding that the words of others can be borrowed for a time to help heal and shape some of my deepest hurts. Some songs included, but not absolutely limited to, are Holy Water by We The Kingdom, Good Good Father by Housefires, Hallelujah Even Here by Lydia Laird and Whole Heart by Hillsong United.

While I know introspection and worship can be deeply personal, this music has been a fun and interesting way for me to be reminded daily of the goodness of God. I’d love to hear some of your favorite songs that help get you through the day!

Set intentional time aside with the Lord.

I’ve had the Holy Bible app downloaded on my phone for has long as I’ve had a smartphone. But I recently discovered a whole new way to use it. I may be late to the party but I usually use it to look up scripture when I’m creating an Instagram post or when I’m trying to think of a new email signature. Little did I know that they have hundreds of devotionals!

You can browse the numerous categories they have or you can search by keyword. It can read the content to you alongside any task you tackle in the day (much like listening to an audiobook or your favorite podcast). I’ve added a video below to show you how to find a study you like and how fast it can be.

The app also provides interactive bible study stories for our friends who are young and young at heart. The devotionals can range from just a few days to several months long. It will keep track of your progress and even send you reminders everyday if you want it to. You can do studies privately or with friends to keep each other accountable. And you can save plans for later if you stumble on one that looks intriguing but you’re not ready to get started.

Sometimes I get so intimidated by guilt or obligation to do my quiet times and therefore don’t do them. This has made it easy to commit and make space in my day.

Lighten up and laugh with others.

Since this month’s Resource Corner seems to be all about listening, I think I’ll round it out with the Mama Bear Podcast. Sean and Mary Susan McConnell adopted their daughter Abiella, who has cerebral palsy and microcephaly. As the host of the show, Mary Susan shares any and all stories of their lives.

Upon bring Abi home, Mary Susan was pursuing her Masters in Curriculum, Instruction, and Assessment and has since completed her Doctorate in Special Education. She is one smart mama and is so raw and real I believe that I am friends with her when I am listening to her stories. She brings intimate insight into struggles and solutions that only a special parent would know and she makes this big world feel so much simpler when she talks about Abi and the joy she feels and brings.

One of my favorite episodes is #108 where Mary Susan and Sean talk about the parenting goals they did and did not meet in 2019 and what they want to accomplish in 2020. Another one that caught my attention is #82 as Mary Susan shares a list of ten tiny things that can help in the chaos. I found it to be extremely encouraging and inspiring.

The McConnell’s make me laugh a lot I look forward to her new weekly episodes.

As we celebrate Christmas and enjoy listening to the sounds of the season, we can be assured that God hears us too. Jesus came. He knows our heart cries and our needs intimately. And He came to offer us the best of all possible gifts on the ultimate of all rescue missions.

Lo’ He is with us always — from manger babe to risen King!


Claire Krantz is a blogger, reader, hiker, camper, game-player, puzzle nut, music fan and general lover-of-people. She speaks in exclamations points — which is her friends’ way of saying she exudes cheer, encouragement, hope and fun. She grew up and lives in the Midwest where she is personally and professionally dedicated to living among friends of all abilities and celebrating God’s unique and purposeful design of every person. 

Follow more of Claire’s reading adventures on Instagram @readingwithcb.

Tap Your Caregiver Strengths

I am a full-time caregiving mom for an adult daughter with severe-profound developmental disabilities and complex health issues. Family caregivers like me understand that self-care can feel daunting, even impossible much of the time. A nap is rare for most. A pedicure, while offering a sweet pampering pick-me-up, doesn’t have far-reaching impact.

I get up every day with more than an aching back and sore forearms. I start each day like every other parent caring for a loved one who has disabilities or mental health concerns. Those caring for an aging parent our spouse understand too. We all have desperate needs to keep up our energy, feel competent, provide safe and efficient care, remain loving and compassionate, fight fears, feel a sense of control over our circumstances, get satisfying socialization, balance attention to each loved one in our lives, do adequate self-care and generally stay encouraged.

Caregivers don’t need to live at the end of their rope! There is a way to stay energized and effective.

REFUEL

Caregivers must explore with great intention how we get energized right down to our soul. Many popular self-care tips are little more than “Band-Aids” with relatively short-term effect on a person’s capacity to serve sacrificially, let alone for the long haul. Caregivers with sustained, long-term energy pay attention to nourishing themselves in body, mind and spirit. Psalm 139 is a wonderful reminder that each of us is complex and unique, beautifully woven by the hand and heart of Almighty God. Christian temperament therapy has been one of the most valuable and transformative tools God has used to help my own family understand and appreciate God’s imprint on us. Caregivers can learn to fuel their souls in very personal, targeted and efficient ways. The process of fueling up helps us optimize our strengths, recognize areas of weakness and vulnerability, identify ways to cooperate with others and ultimately lean into the power of Jesus.

REASSESS

Caregivers are spurred on by having a vision. Do you have a sense of why God has called you to such a situation? God’s Word is rich with truth about His sovereign goodness in disability and reasons for asking us to take care of each other. We benefit from understanding our role on a team that includes God and others. We also need a well-fitting “yoke” and we need to wear it right alongside our Supreme Apprentice — Jesus. A prayerful look at Matthew 11:28-29 gives clues about how to walk in our strengths as caregivers:

Am I really carrying the “burdens” that are meant for me?

Am I carrying these responsibilities in the way that God means for me to carry them?

REPENT

Sin creates a sense of burden and fatigue. No caregiver needs any extra weight! I love the promise of Acts 3:19-20 that offers me a refreshing when I repent of my sin. Every caregiver has his/her own habits and hang-ups that hinder our connection with God and the fruitful potential of our life. I’ll be the first to admit that my caregiver stress can make me vulnerable to sinning. I am not my best self when I don’t pay attention to fueling my soul in godly ways. Psalm 139:23-24 reminds me to take an honest assessment of myself. Second Corinthians 12:9 reassures me that God’s strength is perfect, enough for me and fully accessible to me.

REORIENT

A strong and fruitful caregiver organizes time and priorities around God’s values, their own sweet spots (gifts, talents, experience and temperament strengths) and God’s calling (His unique design and purpose for each of us). Verses like Exodus 14:14, John 15, Acts 17:25 and 1 Corinthians 6:19-20 assure us that God wants to take care of caregivers. We must keep circling our wagons (or wheelchairs, walkers and adapted bikes) around Jesus Christ.

Learning to find our strengths as caregivers is a process. Learning to stay in a sustained groove of energy, effectiveness and sense of purpose is a life-long commitment. We are works-in-progress, after all. The opportunity in that process is to develop a precious intimacy with God and others. God is patient with us and delights in the adventure of our “growing up” with Him. We need to have compassion and patience with ourselves. We must also develop compassion and patience with others around us who are trying to learn their own sweet spots on the team.

Here are some ways to tap your strengths if you are someone who gets energy from doing tasks and thinking about ways to be efficient…

Check out several other practical tips for caregivers who want to optimize their role and stay energized on the caregiving team. (Click the download button below.) Use this downloadable file as a springboard for discussion with your family about how to keep each other energized and satisfied.

One of my conference presentations on this subject is also available to watch on YouTube here.

If you are a strained caregiver, let me assure you that there is hope. There are opportunities and great purposes in what you do. You will be imperfect but God redeems sins and weakness while empowering us with His Holy Spirit. He is able to create much out of nothing. He will remain trustworthy in our atypical lives even when we are doubting. Your mustard seed of faith is enough for Him. God wants you to experience peace — body, mind and spirit — and He will meet you with power right now and forever.

Psalm 73:25-26
Whom have I in heaven but you?
I desire you more than anything on earth.
My health may fail, and my spirit may grow weak,
but God remains the strength of my heart;
He is mine forever.


Walk Right In Ministries can help you or someone you care about to tap their caregiving potential.

  • Read the multi-part series on Tips for Caregivers by searching “sweet spots” on this blog.
  • Learn about God’s imprint on you, your needs and your purpose with a temperament therapist who is certified through the National Christian Counselors Association (NCCA) or the Sarasota Academy of Christian Counseling (SACC). WRIM’s own Lisa Jamieson is certified with SACC and a licensed pastoral counsellor.
  • Work with a licensed pastoral counselor to help your family understand areas of unique strength, weakness and vulnerability. We can help you identify causes of things like anxiety, anger, exhaustion, depression, fear and resentment through scripture, prayer and tools that help explain God’s unique role and purpose for you.
  • Get involved in our peer support group for family caregivers.
  • Explore practical strategies (e.g., ways to build your “tribe” of support, growing as God’s disciple). Reach out for WRIM’s caregiver consulting services.

Write us at info@walkrightin.org or fill out our online Interest Form.


LISA JAMIESON is a special needs family advocate and co-founder of Walk Right In Ministries where she serves as a caregiver coach and pastoral counsellor. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Lisa’s books and Bible studies include Finding Glory in the Thorns and the picture book Jesus, Let’s Talk.

New Light of Excitement about Praying with Kids

How many delightfully different kids from around the world does it take to turn on a light of excitement about talking to God? Well, the author and photographer of the new book Jesus, Let’s Talk discovered that about 30 could do it beautifully! 
 Jesus, Let's Talk
Walk Right in Ministries is very excited to partner with the creative team of Lisa Jamieson (author) and Ann L. Hinrichs (photographer) in introducing the new children’s picture book about prayer called Jesus, Let’s Talk. It released on Amazon this Tuesday to raving reviews and plenty of smiles, especially from the young people who had the opportunity to model for the project.
One young man featured in the book opened his early-release copy recently and eagerly flipped through the pages. But he quickly overlooked any photo of himself because he was more excited about finding his friends pictured there. 

Jesus, Let’s Talk is helping children, early readers, and people with developmental differences enjoy the sweet basics of conversation with Jesus. There are many ways to worship and this natural approach to prayer inspires both the young and young at heart. 

Colorful photographs of children and young people celebrate that the fingerprints of God are on all people, all around the world. The book also highlights key prayer words using American Sign Language. Young ones who are not yet talking, those who experience hearing impairment, and others who simply want to explore the joy of communicating non-verbally will have fun learning new ways to express themselves.

Featured prayers include:
Thank you, God
I’m sorry, Jesus
Help me, Holy Spirit
I’m listening to you
I believe in you
I love you, Lord


We hope you’ll join us in sharing this wonderful new resource with others. Introduce a child to a personal relationship with their Creator, Savior and Friend, Jesus. Jesus, Let’s Talk makes a perfect gift for toddlers, early readers, and for young people with developmental-intellectual disabilities.

Also, would you please go to Amazon and write a review? Sharing your confidence and encouragement is invaluable in helping us get this book into more homes where families can experience the love of Jesus and grow in relationship with Him.

Write a Review
                                                             
Visit the Online Release Party
Lisa Jamieson (author) parents a grown daughter with special needs and is a national disability ministry leader who is also a speaker and author of Finding Glory in the Thorns and related Bible study materials. Jesus, Let’s Talk is her first children’s book. Connect with Lisa at lisajamieson.org .

Ann L. Hinrichs (photographer) serves missionaries worldwide while enjoying the arts as a musician, worship leader, voice teacher, and international photographer. Find out more at annhinrichsblog.com .


 

Miraculous Preservation

A common concern among caregivers, especially parents of children who have disabilities, is what will happen to our children if they outlive us. And as middle age comes, depending on the degree of toll in caregiving and other life circumstances, we caregivers tend to fear that our bodies may wear our long before we actually die. What then?

And so we pray a lot. As we’re able, we do some planning. Having an estate plan in place offers some peace of mind as does doing lots of documentation for those who will be inheriting the caregiving responsibilities. Our family has had many conversations about this and those are always very reassuring as well. But at the day’s end, when my body is aching and I’m weary to the bone (as they say), I’m left with taking it all to the Lord in prayer and begging him to preserve and protect my husband and I for as long has He possibly will!

Today I was reading the accounts of a missionary who travelled a ship between England and China in the 1930s. The ship’s route took them through the Red Sea with full views of the desert places where the Exodus occurred. Audrey Johnson’s pondering jumped off the page at me with reassurance that God’s capacity to preserve and protect His children is not limited by our physical bodies and minds.  

Audrey wrote:

Probably no one who reads Exodus can fully enter into that miracle of absolute dependence upon our faithful God who revealed Himself so clearly that throughout Israelite history and Psalms this miraculous preservation and protection was never forgotten. Think for instance of Deuteronomy 29:5 (which says): 

“For forty years God has led you through the wilderness, yet your clothes haven’t become old, and your shoes haven’t worn out” (TLB).

Audrey Wetherell Johnson

I want to remember this verse and the underlying promise it carries for our family too. Nothing has changed about God, His promises or His abilities. Jesus Christ is the same yesterday as He is today and forever. His character, power, goodness and accessibility remains as certain for me as it was for Moses. In fact, it’s even better because I (we) have access to God through the indwelling Holy Spirit!  

The very same God who so faithfully cared for the people of Israel makes the same kind of promise to me. His protection may look differently than I’m expecting but it remains dependable and will surprise me in the best of ways.

Whether you are a fellow sojourner down the caregiving road with me or someone who just needs reassurance, let us be confident of this — God is creatively preparing all kinds of “miraculous preservation” for us and for those we love.

Jeremiah 29:10-13
This is what the Lord says: “You will be in Babylon for seventy years. But then I will come and do for you all the good things I have promised, and I will bring you home again. For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen. If you look for me wholeheartedly, you will find me. I will be found by you,” says the Lord.”


This post was inspired by the book Created for Commitment by A. Wetherell Johnson, founder of Bible Study Fellowship.

Maria’s Glory Story

Maria Palomino recently spent a few hours helping to update and organize the Lending Library list for Walk Right In Ministries. As she worked, we had fun chatting about the value of certain books and it was interesting for me to learn which books caught her personal interest. Since she’s a young adult, I was particularly impressed by her eagerness to learn and inspired by her hunger to grow in faith.
One book in particular was intriguing to Maria so she asked to check it out and read it. Not long after, it led her to an opportunity for ministry.
Maria wrote:
I have been a Christian ever since I was 12 years old, however I never thoroughly dove into the scientific and archeological evidence regarding what I believe, or how to argue for the validity of the Bible. So when I noticed the book Surprised By Faithby Don Byerly in the WRIM Lending Library, I was intrigued. I knew that when I was done reading this book, I would need to share it, specifically with those who are consumed by questioning Christianity and the Bible as being absolute truth in comparison to other religions and texts.
I actually ended up using this book for my English project and presented the information in front of my class. The student teacher came up to me afterwards and told me he was a Christian as well. Coincidentally, we both had Hebrew tattoos on our left arms! Anyway, the minute that I finished the book, God placed on my heart the name of a friend of mine who was going through exactly the same kind of questioning. I texted his dad right away and encouraged him to get his son to read Surprised By Faith as part of his homeschool curriculum. He ordered it right away, read it himself, and then passed it on to his son who is still finishing it.
I have faith that the Lord will use this book as a vehicle to expand His kingdom and I am excited to hear back from my friend!
It is a privilege to see how God used Maria’s service to this ministry by providing her with an opportunity to encourage a friend in his faith!
Thank you, Maria, for enthusiastically and courageously sharing this story which helps us to see the presence, power and goodness of God among us.
__________________________________________
To learn more about what is available in the Walk Right In Ministries Lending Library and find out how to borrow these FREE and valuable resources, contact us at info@walkrightin.org for a complete listing and our simple lending process.

Accessibility Summit 2017 in Washington, DC

Celebrating its 17th year in March 2017, the Accessibility Summit is a national conference designed to offer a broad range of information and resources to individuals, families and caregivers, faith-based organizations, educators, and other professionals impacted by disability. There will be 40 workshops and over 60 disability-related exhibitors. Saundra Adams and Joni Eareckson Tada are guest speakers.  Registration has just opened and early bird discounts and group discounts are available. 

Walk Right In Ministries is privileged to be sharing a workshop too. Larry and Lisa Jamieson have presented at the conference in years past, sometimes individually and sometimes as a couple. In 2017, Lisa will have the unique opportunity to present with their two oldest daughters, Alex and Erin. Information about their workshop is shared below for those who have interest and for those who are willing to pray for us. (We are very grateful for your prayers!) Check the Summit website for a complete listing of workshops, exhibitors and speakers.

PARENTING SPECIAL SIBLINGSThis interactive session opens a dialogue about the challenges, disappointments, advantages and opportunities of being a sibling in a family affected by disability. It is led by Lisa Jamieson, the mother of three adult children and author of Finding Glory in the Thorns. Lisa is joined by her adult daughters Alex and Erin who share candid perspectives about growing up with a sibling who has Angelman Syndrome which involves chronic health issues and severe developmental disabilities. Discussion topics will include sibling conflict, balancing attention, grief processing, dealing with social stigmas and misunderstanding, family vacations and managing stress. Participants will leave encouraged with basic principles and numerous practical ideas about how to enjoy more victories and deeper graces despite the reality of weaknesses in every family. 

Presenters: Lisa Jamieson, Erin Jamieson, Alex Jamieson
Theme Verse:  2 CORINTHIANS 12:9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” 

Lisa Jamieson is a national speaker, author, consultant and advocate who serves as Executive Director of Walk Right In Ministries and leads Minnesota’s Disability Ministry Connection. Her books include Finding Glory in the Thorns and Living Your Glory Story. She is also creator of the Finding Glory small group curriculum, a favorite of caregivers and others wanting Christ-centered discussion through challenges. Lisa and husband Larry have three adult daughters. Her daughter, Carly, has Angelman Syndrome and lives at home. Their story has been featured on Words to Live By, 100 Huntley Street and My Refuge Radio Belize. 

Alex Jamieson is a senior audit assistant at Deloitte (Minneapolis). Active in her church and as a community soccer coach, Alex also volunteers with Walk Right In Ministries as an occasional speaker and regular encourager to families experiencing special needs. She is the oldest sibling to a sister who has Angelman Syndrome. During her high school years, Alex worked as a personal care assistant and has since become a strong advocate for her sister Carly and others who experience disabilities. In her blog “Authentically Alex,” she reflects on a range of topics from setting goals to dealing with life’s transitions. 

Erin Jamieson is a singer-songwriter and worship leader. Her songwriting, blogging, and speaking is often inspired by challenges and insights experienced growing up in a family affected by disability. The title cut from her debut EP Without the Dark is featured in the movie Season of Miracles about a baseball player with autism. Erin is a senior at Belmont University in Nashville where she recently performed in the 2017 Christian Showcase. Her latest release No Dream Too Big is available on NoiseTrade. Erin’s youngest sister has Angelman Syndrome.

Please share about this conference with your own friends, family and church leaders. You can forward this post and share the link on social media.
Thank you – we hope to see you there!

Delightful Opportunity for Dance Studios & Special Needs Families Nationwide

Do you know a child with special needs who would jump, twirl, bounce and hum at the chance to be part of a dance class? Darby’s Dancers is a wonderful new adapted dance program (non-profit based in Alabama) that has been growing rapidly nationwide. My daughter, Carly (with Angelman Syndrome, del+) has been in the program for 3 years and loves it!  Classes and costumes are FREE to students with special needs and each student is paired with a volunteer coach-helper.

I have come to know the founder of the program quite well and have offered to help her get the word out to others. Here’s her greatest challenge:

In signing up new studios to host Darby’s Dancers programs, they are finding that studios are very eager to support the concept but apprehensive about whether they will get enough students to fill their class(es). For example, right now Darby’s Dancers has two studio owners on the brink of signing — one from GRAND RAPIDS, MI and the other in MADISON, WI.

There is no question in my mind that lots of families want this type of program. It is just a matter of getting the word out. And as I know all too well, non-profits have limited budget for marketing. So we need to rally the word-of-mouth troops — and that’s YOU. Please help spread the word about this fantastic opportunity! Studio owners and the Darby’s Dancers team want to connect with parents of children who have special needs and organizations who serve them. These connections help them get the word out and build confidence with potential host studios that there will be enough interest.

Anyone interested in having a child participate and studio owners wanting to know more about offering classroom space should contact Valerie Jones darbysdancers@yahoo.com.
http://www.darbysdancers.com

Love & Advocacy: Everyone’s Holiday Opportunity

Halloween is done. And that means some people are already dreaming about Thanksgiving pie, fireside card games with family, lunch and shopping with friends, high-fiving across the couch during a football game, delightful music and white Christmases. It also means that some people are already on the slide toward holiday season melancholy. 

And that gets me excited. “Weird and twisted,” you say? Well, it would be except for the fact that there is a very real opportunity to share the life-changing love of Jesus where there the “soil is soft” and hearts are ripe and receptive to receiving love. But seriously, so many of us walk around wondering about our purpose and wanting to be “significant for the Kingdom” when there are opportunities everywhere we look to love someone who is struggling and loneliness may be among the easiest problems to solve. That’s what Jesus would be doing. Plain and simple. Makes me wonder why we complicate it so much.

The subject of isolation and loneliness was up for discussion at a recent meeting of the Twin Cities Disability Ministry Connection. Although we weren’t discussing it in the context of holidays, I thought it would be worthwhile to highlight some of that reflection here because it could help ALL of us capture this opportunity during a season when loneliness is epidemic. Isolation is especially pronounced during the holidays but an opportunity that is always there. 

For many people in the midst of challenges, the sense of loneliness and isolation can feel more overwhelming than the crisis itself. Some even feel like they are being persecuted by God and/or others. For example, things like sleep deprivation, attrition of friendships, stigmas about mental health, lack of accessibility and rejection from Christians/churches can cause suffering that feels like oppression. 

Jesus would not turn too quickly to the feasts and festivities. Jesus would devote time, compassion, affection, prayer, eye contact, conversation. He would sit down and play trucks with a non-verbal boy, hang out with the bullied teen who isn’t invited to the New Year’s Eve parties and patiently re-teach King’s Corner to the older woman whose memory is fading. Jesus’ primary activity was pouring the practical power of His love into people (and so often in the form of healing mercies).

The conversation among church leaders during the Disability Ministry Connection meeting began looking at verses that speak directly to people who experience real or perceived isolation. For example, here are two verses that have brought comfort and encouragement to me personally during seasons when I have felt alone, apart or invisible and frustrated because caregiving makes me feel imprisoned sometimes.

PSALM 68:5-6A father to the fatherless, a defender of widows, is God in his holy dwelling. God sets the lonely in families, he leads out the prisoners with singing; but the rebellious live in a sun-scorched land.

1 PETER 5:8-10Be alert and of sober mind. Your enemy the devil prowls around like a roaring lionlooking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings. And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. [emphasis mine]  

Jesus was regularly found reaching out to people who felt lonely, isolated or discouraged. 

Are we regularly doing this? 

Since disability ministry leaders, not much unlike any of us really, have a unique opportunity to be a voice for caregivers and people who are struggling with physical or intellectual challenges. They can educate others and advocate for those whose needs can get lost in the shuffle of things like busy lives and holiday festivities.

Ministry leaders asked this question: 
Where are we supposed to be on the spectrum of being program developer-implementers vs. educator/advocate/facilitator/culture influencers?  Both are needed and can influence our churches and culture to step out and step up when it comes to engaging with those who struggle. Each of us will lean a little more in one direction than the other depending on things like the season of circumstances/needs in our church, the particular resources available to us, our own personality and passions, or our unique gifting. But the need for us to educate our faith communities is strong and should not get forgotten in the midst of running programs.

Anyone who is not leading a ministry could ask a similar question: 
In what ways am I supposed to be reaching out in practical ways to someone who is struggling versus filling an advocate role in speaking up on behalf of those who need my voice and praying with intention? The reality is that we are all to do all of these things. 

“I’m not one of those advocate kind of people,” you say?

Consider this. Jesus told everyone to “go and make disciples.” No one was excused from sharing the Good News. Sure, some were better at it than others. Some were more passionate about it or comfortable with it than others. But Jesus didn’t put any qualifiers on it. He just said, “go.” It’s the same thing as it relates to engaging with people who are struggling. We’re all supposed to go and get engaged, even if it might get messy or we don’t feel particularly good at it.

I’ve been one of those “high maintenance messes” who has needed too much from others at times because I’m a full time caregiver to my daughter who has profound disabilities. I’ve also been in ministry long enough to have encountered more than a few people who stretched me a long way out of my comfort zone with their weighty needs. But when God puts an opportunity in front of us, we know it, don’t we? And He equips us to engage. If we stay attentive to Him, He also shows us when some boundaries may need to be established. (That’s part of what He means when He promises a light burden. He never wants us to overstep Him or His power at work within us. He never told us strive on our own part.) But God also beautifully affirms our inclusive choices. 

Living like Jesus means, in part, that we extend compassion, attention, time and care towards others. It also means speaking up for “the least of these.” Jesus specifically draws our attention to the needy, orphans and widows while also insisting we throw banquets (real or metaphorical) for the poor, crippled and lame (Luke 14, Matthew 6). These folks need extra care during the holidays and the rest of us tend to be paying a little more attention at this time of year. (It makes us feel good, and less guilty about all of our holiday indulgences, when we try to pour into others.) But what about the rest of the year?

I’m praying that we would all grow increasingly aware of the struggling people around us and become more lovingly engaged with each other. Let’s just be more like Jesus and quit getting distracted by busy work, popular/fancy programs and even well-intentioned church outreaches that take our eyes off of the needs right in front of us.

What can you do right now?

  • Pray. Ask the Lord to increase your awareness of people in your church, neighborhood, workplace, school or circle of influence who may be feeling socially and/or logistically limited by their circumstances (e.g., injury, illness, disability, aging, broken marriage). Consider a way you could connect with this person(s) during the holidays and even a few times a year thereafter. Practical helps like bringing a meal, doing some chores and giving a gift card are wonderful but a simple phone call, email, card game, cup of tea and hug can make a world of difference. Explore scripture and learn together with anyone who may be asking tough questions about the sovereignty of God in their situation. Ask for God’s help to move toward others as Jesus would.
  • Explore scripture and learn together with anyone who may be asking tough questions about the sovereignty of God in their situation. Ask for God’s help to move toward others as Jesus would and make discoveries with them. (There are some fantastic books available to help also. Contact Walk Right In Ministries or check out our Lending Library if you want ideas.)
  • Share this post with your friends on Facebook or via email to help stir appreciation for the needs and opportunities around us.
  • Share this post with leaders and pastors in your church. Let them know there are tremendously helpful ways of connecting right here in Minnesota to help us better understand and grow into the kinds of communities that delight God.  
  • Visit one of the monthly meetings of the Twin Cities Disability Ministry Connection if you are a leader or volunteer in a church. No matter where your church is on the spectrum of serving one family at a time or having an official disability program, these gatherings offer great inspiration and insight. Download the 2016-17 schedule here.
  • Join the Facebook discussion forum for leaders and volunteers wanting to learn about ministering as a church to people with special needs. The page is specifically designed to connect, encourage and grow churches ministering to special needs throughout the state of Minnesota. All group members are welcome to post about ideas, questions and resources to expand opportunities for collective support. The Facebook page is also a great opportunity for those in rural/outstate areas to connect when they can’t easily attend the monthly gatherings in the metro area. You can find us at: https://www.facebook.com/groups/DisabilityMinistryCONNECTION