Care for Kids

I must admit up front that I do not see the government as a great provider of services for those who are disabled. Government agencies are, as a rule, inefficient, slow, bureaucratic and greedy. I founded a Clinical Counseling agency called, Life Way Counseling Centers in 1989. We started as an in patient unit for adults and later set up a similar unit for adolescents. After operating the in patient units for some seven and a half years we closed them and continued to operate the out patient clinics.

Dealing with insurance companies is difficult. They can also be callous, inefficient and greedy. In fact, every organization is greedy to maximize its own financial health and welfare no matter what their mission. However, insurance agencies cannot be compared with government agencies in terms of bureaucratic behavior. Not that the people in government agencies themselves are uncaring but governmental agencies are bureaucratic.

I like the Wall Street Journal a lot. I especially enjoy a daily column called, The Best of the Web. The author, James Taranto, recently included a couple of letters from parents of children with disabilities. They spoke to the issue of government provided care for their children.

Taranto writes: "Friday's email from reader Gordon Calkins, who discussed his frustration with the government bureaucracy he has to endure in exchange for a little taxpayer money to help care for his autistic son, brought more stories from readers with similar experiences. Here is Nikki Stuart:"

Our eldest daughter, now 26, is legally blind and developmentally disabled. She gets Supplementary Security Income, Medicare, Medicaid and Social Security disability.

The SSI and disability come up to about $620 a month. Medicare and Medicaid are a good thing, since she has no other income and is uninsurable anyway.

We homeschooled her K-12 (along with her four siblings), which I figure saved the state somewhere around $900,000, so the government is way ahead in terms of outlay.

Anyway, I agree with the writer with the autistic son. Our daughter would be much better off if the government would get its (left) foot off our necks, leave us alone, and free us up to make and keep some money to take care of her ourselves. The litany of the complexities of starting a small business and scratching up a couple bucks is surely too well-known to you to require a recitation here.

And this is from Bob Ellison:

I have a son with Down syndrome. He receives amazingly generous support via Medicaid from Pennsylvania: physical therapy, occupational therapy and speech training. All four of my sons are covered by my own health insurance, and I have to pay occasional copayment fees and other things for all but one: the one with Down syndrome. My insurance plan never pays a dime on him; Pennsylvania pays.

Twice I have investigated hiring therapists on my own nickel for my son: once for continuity, because he had an excellent therapist, and it takes time to to develop a useful relationship between therapist and subject; and once for extra support, because we wanted more help than Medicaid, generous though it was, could provide. I am wealthy and ready to pay for these things, but that does not help, because my son's therapists work for companies that contract exclusively with the state, and I cannot find alternatives, because the laws and regulations that govern such services make those industries beholden to government-paid systems. The government has created a monopoly; there are almost no workers outside the system.

In a nutshell, then:

1. I am wealthy, but I receive welfare.

2. My one son gets free health care from the state; I have to pay for the other three sons.

3. The government has frozen out other options.

Everything about this is wrong: I do not need and should not receive welfare, but I have no choice but to take it, because the workers cannot take my own money. My son with Down syndrome should not be treated as more worthy than my other three sons. And businesses should be free to provide goods and services as they see fit.
Is it fair for the Federal Government to force parents to accept only treatment provided by their therapists? Is it fiscally wise for the Federal Government to pay for the treatment of children with rich parents?

Middle Class Parents need financial support. Wealthy parents do not. More than finances, however, all parents need to be able to CHOOSE the best treatment for their children. No one knows these children and their needs as well as the parents. Why does the government forbid parents from getting additional treatment from good therapists?

More money is not the answer to every problem. We need parent informed answers not just more legislation and more bureaucracy.

What do you think is best for the children and families? Am I on track? Am I off base? Let me know your experience?

What will lower costs, increase flexibility and improve care? These are very important issues that impact some 20% of our children and their parents but 100% of all tax payers. (By the way, 45% of Americans pay NO Federal Income Taxes. Do you pay Federal Income Taxes?)

Reduce Taxes

Over the past few weeks my posts have been relating how expensive it is to care for people with chronic illnesses. This includes children and youth who have been diagnosed with a chronic disorder like the Autism Spectrum, ADHD, Developmental Delays, Multiple Sclerosis, etc.

I noted that 21% of the children in Ohio ages birth to 18 have some sort of diagnosis. Just think of it. One in every five of your neighbors, friends, fellow church members and colleagues have a child with a serious medical, emotional, mental or physical challenge.

The government at every level spends billions of dollars to provide services and support systems for these children. Every school must hire special teachers, buy special buses and build special buildings for these precious children.

Thankfully, we live in the richest nation in the history of the world. Not even Solomon in all his glory lived like us. We are caring for these folks as children and as adults when they grow up. We have a wonderful record of showing compassion to people in need. Unfortunately, we are running out of money.

Taxes are high already. How can we offer great care at lower costs? That is a question I have addressed for several decades. What do you think we can do?

Lower the Costs of Caring

An election is brewing in the United States and that means that we will hear a lot of crazy ideas and vicious attacks being made by politicians. Why will they talk like that? They want to fool all of us into thinking they will give us everything we want and their opponents are going to take all our goodies away from us.

IMO, one of the greatest causes of the huge rise in costs of caring has been the professionalizing of care for family members with a chronic need. This has come about because of several factors.

1. Historically, only one member of a couple worked outside the home. This allowed the one that did not work outside the home care for elderly adults and kids with a special need. The fact that in today's families almost everyone works outside the home has dramatically altered the ability of a family to provide all the care dependent relatives need.

2. People are living longer and their condition often demands more professional care.

3. Kids with severe birth defects are more likely to survive today than in the past and those who live require more professional services.

4. Various governmental acts have provided guidelines that require more intensive and extensive care. We must respond appropriately and completely to these regulations.

5. Some professionals and their professional organizations have campaigned hard to spread the false notion that Peer Helpers are inept or dangerous to the health and welfare of people who need special care.

The only one of these points that we can impact is the last. research clearly shows that Peer support and Peer Care can be as effective as most Professionals. We need to get the facts out to the public and to the government agencies that make important decisions about how to best care for people with chronic needs.

Medical Costs for Kids

By this time I assume that most people know that Ohio is overextended financially. This fact has brought about the election of John Kasich as Governor and other Conservatives to the state congress. Can they solve the state's budget problems?

There has been a lot of discussion, conflict and debate over how to reduce the state budget and how to reduce taxes. The biggest costs are very hard to reduce. We need creative, innovative thinking to save big money.

One of the biggest problems facing Ohio and the entire USA is health costs especially Medicaid. Take a look at the high cost of caring for Ohio children with a serious medical condition.

Based on analysis of the 2008 Ohio Family Health Survey (OFHS) an estimated 570,000 children have special health care needs, representing 20.9% of all children aged 0-17 in Ohio.

Based on a national sample of children aged 0-17 years from the 2000 Medical Expenditure Panel Survey (MEPS) CSHCN accounted for 42.1% of the total health care expenditures in this age category (not including dental costs).

So, approximately 21% of children and youth suffer from a serious medical problem and they account for over twice that percentage of medical costs.

You can bet your band aid that the state is going to look for ways to reduce its portion of that cost. The usual way of cutting costs is to make medical care harder to access and to pay Doctors less. That is not a good solution.

Be Creative

If I were in office I would be asking all citizens to help me figure out ways we can give great care for sick children while eliminating waste and inefficiency.

This is where you and I come into the picture. Our research is unique because we actually went into the homes of the families with chronically disabled children and asked them what they needed to help them as an entire family. I am convinced that if we can enlist the parents, grand parents, friends and neighbors into thinking and acting on this problem we will discover many great ways to improve the quality of life of the children and lower costs.

What ideas do you have? As we continue our discussion about these issues I will make some suggestions and see what you all come up with. This approach is called, "Crowd Sourcing" and is being used by P&G as well as several other creative companies. By seeking the knowledge and wisdom of all citizens we can arrive at solutions that are creative and out of the box.

If we do nothing to change the current medical system, costs will continue to rise and overwhelm the state, the nation and the families with children. Join with Sweeten Life Systems and give us your innovative ideas.

We are launching a new ministry focus to facilitate innovative thinking about ways we can support the The Village Initiative with Parents. It takes a whole village to raise a child and it takes a whole village to bring new, less costly ways to care for sick kids.

The VIP Program will stir the pot along with concerned Parents to come up with out of the box solutions. Our approach is not to do everything FOR the parents and families but to encourage them to take the Initiative to discover better ways for themselves.

We hope that all concerned people will join us and the parents to be entrepreneurs in this area. Write your ideas in the comments section or send me an email at gary@sweeten life.com

Compassion or Completely Ignore

Now that you have seen the raw numbers, I have a question: "what can we do about having so many neighbors facing a lifetime of medical. emotional, relational and spiritual barriers? Is there anything we can do to show compassion?

What would it take to really make a difference in the lives of these families? Do we need to have special training? Will I have to return to college and get another degree? If we get involved is there a danger the child could get sick or even die when I am caring for him or her? Do we have to sign a confidentiality statement or be in violation of the HIPPA Laws?

Well, it is easy to answer some of these questions. For example. HIPPA does not apply to caring for a person. Some of you do not even know what HIPPA is, but I have gotten this question several times already and I need to calm people's fears.

Second, our focus is on supporting the parents. Here is what we know about the challenges of rearing children. Parenting is not for cowards. It is stressful, wearying and full of overwhelming challenges that call for wisdom and experience. Oh, an by the way, it can be expensive. For parents and siblings and extended family members of children with a serious medical problem, the stresses, costs and demands seven days each week 24 hours per day are much higher.

Think and pray about what you as a young parent would need from friends, neighbors and caring Christians. Go through your own days with a small child or two and think what it costs you to always be on call. I will share later with you specifically what the parents in our yearlong study told us they needed, but I want you to think it over on your own.

One story comes to mind from a young mother with a son who was finding self discipline a hard thing to master. She went to a festival alone with two children and the eldest started taking his clothes off. As he ran before his mom she was carrying her baby and trying to catch the speeding kid who was rapidly moving ahead and re-moving his clothes.

Mom had such amazing resiliency. Despite originally feeling embarrassed, she decided that day to stop trying to become a super mom and be a regular mom with two hyper energetic sons. No more Wonder Woman, just be herself and enjoy those kids as much as possible.

Blessings and go to our web page and read some of it. You may also want to watch one or two of our videos. They are produced especially for parents and care givers but the principles will apply to anyone who is alive and kicking through life.

We will train folks with our Special Life Skills so they can tend to the parents, listen to them and help with practical things. We have a simple plan to positively support the families in need and help them achieve a place of joy, resilience and family love.

Thanks for reading...I would love to hear your feedback and questions. I am awfully bored just writing to myself.

By the way, we are putting up our display at the Xavier University sponsored Symposium Friday called Remarkable Parents. It will honor parents of children with a special need who have shown love, caring, innovation and resiliency.


Gary Sweeten

Kids with a Diagnosis

All the children and youth mentioned my recent posts have a diagnosis. Many were undiagnosed until they went to school and the teachers saw something wrong and asked a School Psychologist or another person to do a thorough interview and testing and the professional came up with what we call "A Differential Diagnosis".

May I add, such a diagnosis is not easy to do. It takes a well trained person who knows how to interview and knows all the possible categories into which a child might fall. This diagnosis is not fool proof or infallible. Unlike some diseases, many of the childhood areas of issues are not diagnosed with an X Ray, Blood Test or Biopsy. That means that there can be disagreements about the accuracy of what ails a child.

But skilled therapists can usually get pretty close and hopefully come up with a course of counseling and treatment that will assist the child and his parents. That means that the interviewer actually interviews the parents of the child and gets their input. As we found in our research, parents are rarely consulted by Doctors, Psychologists, Occupational Therapists, or Ministers. That is a shame and a real problem that Sweeten Life Systems will soon tackle in a very big way. (We are launching a new brand called, The Village Initiative with Parents or VIP to focus on Parents and other people who love children with a medical diagnosis.

Just consider this: If there are over 570,000 children and youth from birth to age 18 in our state, there must be two parents for each child, four grandparents and several siblings. Although the 570,000 kids represents a huge number of people to treat directly, double that number for parents, double it for the siblings and quadruple it for the grandparents. Wow, that is a lot of folks who are personally affected by the children in their family who have a serious medical problem.

Just count all the persons affected because there are so many children in Ohio who have to deal with a serious disability. Look at the following numbers:

Children + 570,000 + Two Parents 1,001,400.00 + Four Grand Parents 2,280,000 + Two siblings 2,280.000

This is a grand total of 6,270,000.00 people affected by all the children diagnosed with a medical issue in Ohio. That is roughly 50% of all the people who live here.

Does anyone care how the parents, grand parents and grandparents and siblings feel? Does anyone ever ask them or support them or care for them? Has anyone ever developed any Special Life Skills to improve their lives?

Would it make a difference is churches and community groups actually asked the extended family members what they needed?

We can tell you because we asked them who was helping them.

Kids With a Disability in Ohio

I offered you all some bait last time but nobody bit on it. I hope some of you read it and pondered the question. It is an important issue. Not just disability but knowing our neighbors who have a disability, especially children, and caring about them.

there has been a lot of information put out by various governmental and volunteer organizations about the numbers of seniors who require a care taker. However, the number of children and youth that need intensive care is not that well known. So, here goes again.

I mentioned these data today to some friends who are well educated. One is a Physician and two are nurses. I asked them to guess the percentage of kids from birth to 18 with a serious disability and all of them asked, "What kind of disability?"

That is a reasonable question. If we are speaking of mental disabilities then we would suppose a rather small percentage of the population. However, even after i said, "All kinds of mental, emotional and physical disabilities" they started to guess a pretty high percentage. However, not one of them guessed anywhere near the real number.

Nor did I come close when I was first queried about it. The number of kids ages birth to 18 in Ohio with a serious health need is 570,000! That is a lot of children and young people. How many of these young people do you know? How many of their parents do you know? Do you ever ask how the child is doing? Do you ever ask them how you could help?

Sweeten Life Systems is launching a new ministry to the parents, grand parents and care takers of these children and youth. We are going to call it The VIP Project for Village Initiative with Parents .Check out out web at www.sweetenlife.com to learn more.