Healthcare

Disability Advocacy in Your Community

By Rev. Mindi

April is Autism Awareness Month. In previous years for Autism Awareness Month, I have written about how to create a welcoming environment for families that have children and youth with autism in your church. However, there is a greater need within the greater disability community to help support advocacy. Here are some ways you can help become an advocate within the greater community, and therefore your church.

Did you know that you can be an educational advocate?

As a member of my local special needs PTA (Parent Teacher Association), I have let parents know that I am willing to go with them to IEP (Individualized Education Program) meetings. Students with special needs often have an IEP or a 504 plan (a 504 plan provides for accommodations for students with special needs; an IEP provides for individualized instruction and is much more detailed).  What do I do at those meetings? I am a non-anxious presence, there to provide support for the parent so they know they are not alone, as well as for the student. I ask clarifying questions. I am not there to take sides, but rather to encourage dialogue and offer support.

I am also an educational surrogate. I serve as a surrogate within the school district for students whose parents do not currently have custody and are not in the foster care system. I work to ensure that a student receives the supports necessary, which may include an evaluation for services and support and the beginning process of an IEP or 504 plan. I become part of the educational team.  How this happened for me is that I was asked to do this by a district official, who knew me as a parent of a special needs child, a board member for the special needs PTA, and as a local pastor. Since this time, I have now met two other pastors in other districts who also serve as educational surrogates in their district.

You can also join your local special education PTA, if there is one, or help form a community support network for students, as well as parents and educators of students with special needs. It takes the whole community, not just the family, not just the school—to help educate and support our special needs students and families.

Look for local disability advocacy organizations—they often need volunteer help—and partner with them. The ARC is a national disability advocacy organization with local chapters that has folks with disabilities on their staff and boards, and works to help individuals become self-advocates. With any disability organization, always check to see where its funding comes from, how its funding is used, and whether or not persons with disabilities serve on its board and staff. Persons with disabilities should be included in their own advocacy.

And as always, remember to include folks with disabilities in your church life. Folks with disabilities are already part of your congregation. They may be regular attenders in worship, but sometimes we forget that folks with disabilities can, and should, be included in leadership, worship, education and outreach—in other words, all aspects of the life of the church just as anyone else. And above all, be an advocate, wherever you are, for inclusion of persons of all abilities into our faith communities.

Rev. Mindi and her friend Rev. Danae Ashley launched Autism and Church in January. They are looking for more contributors, especially from adults and youth with autism, to write from their experience.

Recommending Wilderness Blessings

By: Rev. J.C. Mitchell

Not that many years ago, my wife and I went for an ultrasound which left us scared, and we were given an appointment for another ultrasound at the hospital with a skilled doctor who simply analyzes visual pictures created by sound waves.  The worry was that there were two markers of Down syndrome.  Being clergy, we shared this fear in prayer at the church we attended together in the evening, after working at our respective morning churches.  A retired minister came up to me in fellowship time and was pastorally navigating this raw situation.  This wonderful man, David, was sharing very carefully that all people are people, when I said to him we are not mourning having a child with special needs, we are mourning the loss of our perfect dream and admitting we are scared, for no matter what, this is our child.  He smiled and said, “You will be good parents.”  At that hospital appointment, we found out that there was no reason to be concerned, but I am glad we had that moment, for I believed it helped us as parents to deal with our son’s autism which became obvious when he was about 18 months.  We had this cathartic moment to remind us that our fear is ours, not our son’s.  

There are many stories of children with special needs and often I share from my experience, but today I want to recommend a book by Rev. Jeffrey M. Gallagher, Wilderness Blessings: How Down Syndrome Reconstructed Our Life and FaithThis is the story of a pastor whose son Jacob was born with serious heart issues and Down syndrome.  Looking back through the Caring Bridge entries during the two surgeries of his son’s first year, he shares what it means to see the Body of Christ to include everyone through the lens of differing abilities.  Gallagher asks, and then admits by answering his own question, “So what makes Jacob’s story so special then?  Nothing.  And everything. And that’s exactly the reason why I felt so compelled to write this book.” (163)  I am so thankful that this very specific story shared is understood to be also a universal story for people with different abilities.

I must admit that I have been obsessed with Theology of Disability since Gallagher’s editor and mutual good friend, Rev. Dr. Beth Hoffman, introduced me to his way of thinking at the same seminary Gallagher attended (he graduated the year I began). Now having a son with different abilities and a new ministry that upholds creating a loving inclusive culture no matter of ability, I would of course read this book.  Also, having had a sister that was born with a heart condition that required surgery when she was a young child, I was compelled by this story of” J-Dawg’s” (Jacob’s) surgery.  However, I do not simply recommend this book to people that have children with Down syndrome, or other different abilities, nor for people that know what it is like to have a child need serious surgery.

I recommend this book to those that do not, as well as those that do have a child with different abilities. So often I talk about the theology of disability to pastors and lay people at conferences or coffee shops (or anywhere I go), and generally the response is to reply “that is interesting.”  Then they tell me some sort of success story they know, either in their church or another.  I listen intently because I love success stories, but I try to bring it back to why it is important to actually understand what it means to be an Open and Affirming church, which is not simply to be for equal marriage.  Don’t get me wrong--I like the success stories, but I recall once when serving in Massachusetts a youth saying we are not racist in that state because we elected Deval Patrick governor.  I know that is a success story, but I also know there are still systemic racism in the Bay Colony. 

Jeffery Gallagher engages the reader through this very tough first year in the raw entries from the Caring Bridge page.  He also brings in other future events up to the current reality, and leads the reader to understand what it is to have a child with special needs.  While not all have such life threatening surgeries, it is a story that resonates with the reality of raising a child that has different abilities.  Gallagher admits, “Looking back on these posts has revealed just how much of Jacob’s journey at the hospital is a metaphor for the life that we have lived with him.” (137)  There are steps forward and steps backward, the uncertainty that is the only certainty, and advocacy is needed throughout Jacob’s life. 

Gallagher writes this story in a very compelling narrative for those that know nothing about having a child with special needs.  You will be drawn into a wonderful story of vulnerability and love, and gently introduced to the theology of disability, which will only enhance one’s appreciation of the church as a place of belonging for everyone. 

To purchase this wonderful book please go to Chalice Press Website.

Gallagher, Jeffery.  Wilderness Blessings: How Down Syndrome Reconstructed Our Life and Faith.  Chalice Press: St. Louis, Missouri, 2013.

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Healthcare: Injustice for All

By Rev. Mindi 

A four-year-old classmate of my son’s has cancer, very advanced, and the insurance company has deemed his treatment “experimental” and will not cover it.

A friend is stuck paying thousands out of pocket for a procedure that was not covered by her insurance company but deemed vitally necessary for her health by her doctor. Hospital refused to consider her for their low-income payment plans because she didn't qualify.

A friend’s father had a stroke. The doctors at the local hospital refused to consult with his neurologist because he was part of a different hospital group and therefore critical information was not passed on.

This is wrong. This is injustice.

In the U.S., healthcare reform is coming into play. One can no longer be denied insurance coverage due to a previously diagnosed condition. Families can carry young adults on their insurance plans until age 26. Many forms of birth control are now available without extra cost through insurance providers (though there is a religious exemption that is still being debated).

But it’s not nearly enough. The gap between those who are so poor they have to be on state insurance and those who are just able to afford to pay for insurance or have an employer who will do so is widening. The gap of those who will slip through the cracks, who will pay a penalty and not have any health insurance is a chasm no one should have to fall into.  And even wider still will be those who will have insurance, but like my son’s classmate, the insurance will fail to cover many expenses.

My own family, on a denominational health insurance plan, pays much out of pocket to cover our son’s therapies and various appointments, not to mention dental coverage that is extremely costly and not covered. We are stretched so thin that we have had months where we have decided what bills to pay and what bills to put off.

And even those on insurance find themselves victims of hospital for-profit corporations whose doctors have to play politics to keep their job rather than consulting with one another across the same field, thus resulting in misdiagnosis, misinformation, and at times critical injury or death.

This is wrong. This is injustice.

Where is the church in all of this? In the news, the “church” is the one arguing for religious exemptions from having to provide coverage for birth control. Within our denominations, our churches vary at providing good coverage or poor coverage. I was on one denominational plan before I was pregnant with my son that provided so little maternity coverage (as I have found few mainline Protestant denominations do) that I switched to a private plan. We paid a little more per month for premiums, had a higher deductible, but almost everything was covered for our son’s birth. This turned out to be good news, as I ended up with an emergency C-section, a massive infection and extended hospital stay, plus home health care. I can’t imagine the thousands of dollars we would have paid out of pocket had I been on the previous plan, or how soon I would have been sent home from the hospital.  The church plan would have left us scrambling to pay the bills.

Churches, we can lead in this.

We can demand better coverage from our insurance companies for our staff and employees.

We can work to organize people in our congregations to speak out for better healthcare coverage from their employees and from insurance companies.

But most of all, I believe we need to change our system. We have to confront the idea that employers are the best dispensaries of healthcare coverage has got to change. Healthcare cannot be a benefit that is earned by a few.

We need to challenge the idea that healthcare is a privilege, and lifting up healthcare as a universal human right.

We must change the notion that anyone is expendable, whether they have a disability, an illness, a genetic condition, are poor, are sick, are elderly, are not documented, or any other way people have been devalued by our system of health care.

We must speak out for a new vision of healthcare, one in which people are valued over corporate rules and politics. One in which doctors and experts are free to speak to one another and share information easily to reduce miscommunications and mistakes.

What if churches were to lead the way? What if we were to bring together doctors and nurses and hospital officials in our communities and say, “How can we change healthcare in our community so that no one falls through the cracks?”

What if we were to group together and provide low-cost health insurance to our members (imagine the memberships piling in!) and provide basic medical services (such as regular health screenings, flu vaccinations, and other prevention-based services) to the community?  What if we didn’t just have blood drives but had basic first-aid drives and gave away basic first-aid needs to the community? What if we got a dentist and a hygienist to offer free dental cleanings once a month?  What could we do together?

If we as churches are concerned about the well-being of those who are part of our community, then we must step up to bring change about to health care. And I believe we can start that transformation of the system by rethinking our role. We don’t have to just speak out for one form of health care reform or another. We can act. We can support local clinics, or begin one. We can do our part to transform the conversation, to transform the system, if we dare to dream about our role in healthcare differently.

Are any among you sick? They should call for the elders of the church and have them pray over them, anointing them with oil in the name of the Lord. ~James 5:14

SCOTUS Decisions—Reflections Part 2

By Rev. Mindi

This morning on the West Coast I quickly turned to the news at 7 a.m. just in time for the breaking news to be revealed that DOMA had been struck down, and in the revealing of the decision and the minority opinion it was clear that Prop 8 would also be struck down.

I rejoice in that there is no federal reason for denying people the right to marry or to deny benefits for certain types of marriages. However, the ruling leaves it still up to states to pass equal marriage laws.

As many have already noted, if one really is for civil rights, for human rights—we cannot rejoice fully. Voting rights have been restricted; Euro-American cultural values have been valued as the norm; we still do not acknowledge the T in LGBT. Trans rights are often ignored or scoffed at, though there are currently several court cases for trans teens fighting for their rights in state courts. Teenagers are the ones speaking out for their own rights because teachers and administrators have failed to do so.  And as a parent of a child with special needs, even though we have had the IDEA act renewed in 2004, we find our rights and our son’s rights violated everywhere we turn in the public school system. And we are Euro-American—add in other cultural differences and different languages, and we find that even Supreme Court rulings do not guarantee rights for all will be granted.

As people of faith, we must lead the way on human rights. We must listen to the minority voices in our congregations and beyond in our communities, and work for justice for all. It’s easy to take a quick look at one’s congregation and see some of the issues they face, whether it’s the right to marry, the right to receive disability benefits, the right to get a driver’s license; it’s much harder to know whose rights are violated with the lack of a comprehensive immigration law, who doesn’t have access to adequate health care, and other rights that may be violated or ignored. If we assume a certain issue does not apply to our congregation so we can ignore it or evade it, we are failing the community at large.

SCOTUS Decisions: Reflections, Part 1

By Rev. Mindi 

 Due to the SCOTUS decisions of Tuesday and pending Wednesday’s decisions, I thought I would forgo my usual Wednesday article and reflect on some of the court decisions made on Tuesday, with the idea that others may contribute reflections following the decisions announced on Wednesday morning. For a comprehensive list of the decisions made, go to http://www.supremecourt.gov/  These decisions impact us as Americans, but are often not mentioned on Sunday morning. As clergy and church leaders, I feel that it is imperative that we reflect within our faith communities on these issues and offer some way of responding, through word, action, and prayer.

Tuesday’s decision on the Voting Rights Act http://www.supremecourt.gov/opinions/12pdf/12-96_6k47.pdf was a split decision, with the court upholding the 1965 act in that voting procedures must be approved by the federal government (preclearance) in areas where racial discrimination in voting practices has taken place. However, the court struck down the part of the law that dictated which states and jurisdictions were affected by this, stating that the coverage formula needed to be readdressed to be up with the times.  The Supreme Court is sending this part of the act to Congress to decide.  Seeing how it’s been difficult to get Congress to act on anything, this is frustrating to those of us who know how prejudice is still used in discriminating at the voting booth.

As people of faith, what can we do? How can we respond? I think of the number of churches that have partnered together with other organizations for voter registration drives and work to make sure those in our communities are registered to vote. Secondly, we also need to listen to those who have experienced prejudice at the polls, for those whose registrations were considered to be illegitimate, for practices that deterred others from voting. We need to make sure that we speak out for fair voting procedures in our own communities and be involved in voting rights for all citizens. And we need to speak up and take action against unfair voting practices.

Another decision on Tuesday was about adoption http://www.supremecourt.gov/opinions/12pdf/12-399_8mj8.pdf This was a hard case. This story gained nationwide attention in the news, and so it’s easy to take sides and feel sympathetic with all parties involved. But what we need to keep in mind is the history of white governing officials making decisions for American Indian children, and the continued intervening and taking children away from their family and culture of origin. It’s important for us as people of faith to be mindful of our history, to be aware of how Euro-American culture is still perpetuated as American culture and that Euro-Americans still push values associated with that culture on to others.

Finally, I want to end with some reflections on a situation not in the Supreme Court but in Texas. Senator Wendy Davis, as I write this, is standing for thirteen hours without a chair or ability to lean on anything to filibuster a law that would basically prevent abortion clinics from operating in Texas http://news.yahoo.com/texas-senator-filibusters-against-abortion-bill-164526586.html  (side note: my husband pointed out that these rules by the Texas Senate make it so that anyone who has a disability in which they cannot stand is inherently discriminated against from being able to do their job, but I digress… somewhat).

This ban on abortion clinics and restrictions on clinics and doctors ignores Roe V. Wade, ignores the laws that protect a woman’s right to choose and places women’s health and responsibility to make choices about her health.  I have written in the past about the need for both sides on the issue of abortion to come together and find some common ground in reducing abortions, but laws like these will not reduce abortions. Many women will be forced to go out of state, possibly into Mexico where the health regulations for such clinics are not at the same standards in the United States, and many more will probably receive unsafe, illegal abortions. Besides abortion, many of these clinics provide health screenings, birth control, counseling and other vital services to low-income women, and they will be shut down because of one procedure they perform that is controversial. Also, all abortions would be banned after 20 weeks. Seeing how the 20 week mark is the screening ultrasound date that is covered under most insurance policies and not before that, many women and doctors do not know that there is any health risk to fetus or mother until that point, and under Texas law if it passes, it would be too late.

As people of faith, we may differ on the issue of abortion, but we need to stand up for women’s health in the case of extreme measures. The Texas law will go too far, will ignore the Constitution and will trample on women’s health.  I’ve shared in previous articles about the need for conversations on health, birth control, and sex in general in the church to reduce abortions and raise the level of women and men’s health.  As leaders, we cannot be afraid of speaking out on these issues, when people's very lives and health are at risk.

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As people of faith, we watch and wait in earnest for Wednesday’s decisions on DOMA and Prop 8. We pray for justice to be done, for freedom to be upheld, and most of all, for love to prevail. Check back for reflections here after the decisions are released.

Let's Go Dutch

By JC Mitchell

So being a parent of a child with special needs is hard to explain to a parent with a child that is typical (that is physically, neurologically, mentally, typical).   I will be the first to admit at times I have no idea how you deal with the demands of a four year old typical child, for my four year old with autism never talks back and never asks for the newest toy.  Emily Perl Kingley wrote in 1987 this piece that is shared with parents with children with special needs as well as those trying to understand. It is called “Welcome to Holland,”

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

This is powerful, and I hope eye-opening, and the second to last line is just as important as the last.  That is the tension.  You can imagine if you did actually end up in the Netherlands and not on the Apennine Peninsula, you would be angry at your travel agent.  For me, the closest thing to a travel agent would be God, so I would express my angry to God at times.  Yes, I would not want to miss the tulips or the windmills, but I express my frustration about the situation to God.

It is however, not going to Holland that I am angry about any more.  I have mourned that and I enjoy the very lovely things of my landscape.  The difficulty is everyone that has been to Italy only wants to see the pictures of the windmills, and not hear about the frustration to the travel agent.  They want to compare Rembrandt with Michelangelo and not hear how many therapies, extra time, money, tears, prayers, and hard work it took to get a Rembrandt.  I have learned Italian (only metaphorically) but none have bothered to learn Dutch, or even Frisian.  That is actually where my anger lies even more, because that is why I am reminded of the pain and difficulty of raising a child with special needs, when those with typically developing children think nothing of our adventure in Holland.

A great example of this insensitivity is within the current school district we live in.  We had a listening session on Monday night, and one group that admitted to be parents of gifted children stood up and spoke Italian and claimed Holland.  That is one step too far. I am angry.  They said their children also have special needs and held up a bell curve.[i]  They inferred that children with special needs are taking resources from their children and thus claimed Holland: Special Needs.  Because I have been forced to speak their language as well as my new Dutch, I realize what they are saying, that their children have special necessities, but to say they have special needs is to steal our language without understanding what we go through.

To cut any more programs and help to children with special needs means a difference between independence and/or reaching full potential for people, while cutting programs for the gifted, means they need to do independent study or create new group situations.  Having been a member of the National Honors Society, (teacher made me join, go teachers!) I recall that I and other truly gifted students studied and did projects on our own, or through civic organizations.  They all made it to college; and yes, some made bad decisions, but that’s life.  My anger is that the superintendent of schools, or anyone else, did not politely tell these people that utilizing another’s label to take resources from them who desperately need it was insensitive and infringing on civil rights.  That’s correct--civil rights.  The population with various disabilities deserve education and yes it costs more, but trust me, the parents take on a lot of the bill themselves.  To me, it is not unlike white families that say the same thing about an immigrant population.

So in my best Italian, I encourage you to read the piece above again, but go forth trying to learn some Dutch.  

Jesus tells us the neighbor is the one who shows mercy, the Samaritan, a person considered lowly and not of the neighborhood.  The language of the Samaritan was that of mercy and compassion, without boundaries.  We need the gifted to be challenged, but more importantly, we need to have compassion for those with Special Needs and at least provide the basic assistance to bring every child up to their potential.  We are not quite there yet, even with great teachers, parents, allies, and SPECIAL children.

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[i] The bell curve is irrelevant for those with disabilities range on both sides of the curve.  I myself was tested for gifted and special education. While gifted programs are simply for a small amount at the top, some of may even require special needs education be it for a physical, learning, mental, or developmental disability.  I footnoted this for this is absolutely ironic that the parents of gifted children did not understand this, or they are just very clever.  Either way, does not look good.

NOW I KNOW HOW MY FREEDOM IS BEING TAKEN AWAY!

By Craig M. Watts

For a while now I’ve been hearing from some folks I know and who love tell me that “our freedoms are being taken away.” In particular they have insisted that the health care reform measures were stripping away freedom. I confess I wanted some different kinds of reforms. Still, I hadn’t noticed that any of my freedoms were missing. I certainly hadn’t felt less free. My behaviors weren’t being restricted in any ways that were new or unusual, so far as I could tell. Yet I didn’t doubt the sincerity of my friends, though they had a hard time explaining just how I was being deprived of my freedoms.

I didn’t worry about this too much because the Supreme Court was likely to declare the Obamacare unconstitutional. But that didn’t pan out.

Finally, I decided I should do a little research. After all, I sort of like freedom. I’d hate to lose it. So even though I hadn’t detected any missing freedom, I thought it wise to check, just in case. Here is some of what I discovered, among a long list of others disappearing freedoms.

  1. We are losing the freedom to have our employers burden us with higher and higher deductibles in order to increase their profits. Now deductibles can’t be higher than $2,000 for individuals and $4,000 for families. How oppressive!
  2. We are losing our freedom to have insurance that has no preventive care, something that may have been less costly in the short run but much more costly in the long run. But now I can make sure I’m healthy before I get sick and I don’t have the choice of just getting seriously ill without an opportunity to avoid it!
  3. We are being deprived of the freedom of having an employer provide insurance that won’t include my “slacker children” up to age 26. Surely, that is an onerous restriction of liberty!
  4. We are having the freedom stripped from us to have insurance companies raise the premiums we pay however much they want without a review by the Secretary of Health and Human Services who might disallow them if the increases are considered “unreasonable.”
  5. We are being cruelly deprived of the freedom of having an insurance company board or its stockholders give its CEO –whose average salary is about $30 million dollars a year- more than $500,000 in deferred compensation.

And there are still other ways in which we are being robbed of freedom by Obamacare. It is going to be next to impossible to get insurance that will not provide ambulatory patient services, emergency services, hospitalization, mental health and substance use disorder services, and prescription drugs. We are being deprived of the freedom of getting inadequate insurance, even if we really, really want it! And, worse, people who are less healthy or poorer than many of us are going to benefit and that is intolerable and ungodly.

Now that I know what is really going on, I feel overwhelmed with a sense of oppression. So many of my freedoms have been taken away I can hardly breathe! I am now virtually a slave and I didn’t even know it. Oh my! This calls for a revolution!

 

Craig is minister of Royal Palm Christian Church (Disciples of Christ), Coral Springs, Florida, Co-Moderator of Disciples Peace Fellowship and a brand new Granddad who is willing to show pictures of his amazing Grandson if you want to see a few.