A drug to prevent premature birth priced out of reach for most women?

[Premature birth is a significant risk factor for cerebral palsy and other disabilities]

The Detroit Free Press featured an article on March 21, 2011, (Drug price for a safe pregnancy: $30,000 by DFP medical writer Patricia Anstett) about a drug that has been effective in reducing premature births and has been available for pregnant women since 2003. The cost has been $200 for a regimen of 20 injections.

The Federal Drug Administration has granted final approval for Maken, the brand name of the drug that is now produced exclusively by Ther-Rx, a subsidiary of K-V Pharmaceutical of St. Louis. The drug has been designated an orphan drug (benefitting fewer than 200,000 people) which gives special incentives so that the drug company can make money on it. A regimen of 20 injections will now cost $30,000.

The pharmaceutical company has created a financial aid program to help poor women get the drug for free and others to obtain discounts, but the high price may deter Medicaid from paying for the drug and generally reduce access to the drug by pregnant women who need it.

The Website "A Healthier Michigan", sponsored by Blue Cross Blue Shield of Michigan, posts an article, Inflated Drug Price Lands Pharma Company in Social Media Crisis, discussing the PR problems the drug company is facing with the launching of a facebook page opposing the exorbitant price increase.

More background on the story is available in an article from the St. Louis Dispatch from March 10, 2011. It turns out the company that has exclusive rights to market the drug did not invent it. The new cost of the drug will make it more expensive to use the drug to prevent premature births than to not treat women and pay the added costs of the premature births that will occur.

Just one more clue as to why health care costs are so high.

Community Resources: Waiting for spring at the Botanical Gardens

Anyone who has spent time with my son Danny knows that his mood can fluctuate wildly, between sublime and exuberant joy to extreme irritation and frustration. Even on a good day, he is often cranky. Danny cannot communicate in any specific way about what he is feeling or why he feels the way he does. My educated guess (after 34 years) is that his hypersensitivity to touch and sometimes sound, combined with discomfort related to his severe cerebral palsy including gastrointestinal problems, have a lot to do with it. Danny seems to know, however, what makes him feel better: if he could, he would spend most of his time sitting outside in his wheelchair, listening to the birds, and breathing fresh air.

Winter is a rough time of year for Danny, but we have found an almost perfect place to take him to make the wait for warm weather a little easier. The University of Michigan Matthaei Botanical Gardens in Ann Arbor are full of all the sensory experiences that Danny can appreciate. Although Danny has very little functional vision, he can hear, feel, and smell all that the greenhouses have to offer.

In the tropical greenhouse, the air is warm and humid. There is a fish pond with water dribbling from it and a relatively large water fall whose sound sends Danny into a fit of ecstasy.  We enjoy the lush displays of orchids, the banana trees producing one of Danny's favorite fruits, and we see and smell the new green growth and flowering tropical plants.  We have contributed a couple of overgrown trees to the Botanical Gardens that we visit on each trip - a Key lime tree that we started from seed and a Plumaria, both from Florida. 

The temperate greenhouse is cooler but also light and spring-like. It has a koi pond with water dripping over ferns into a pool. I always stop by the rosemary bush to give Danny a whiff of rosemary and pull gardenias or other sweet smelling flowers close enough for him to inhale. The third house is a dry desert environment that is cooler and houses exotic cacti, Spanish bayonets, Century plants, and other oddities.

Danny can hear the sounds of people milling around, especially small children who delight him with shrieks and chatter. On this particular Sunday, there is something like a scavenger hunt going on where children mark off items on a list of objects and plants that they discover on their route through the greenhouses. As an added bonus, Danny discovers that in the desert house there is black sheet metal along the walls covering up a heating apparatus. Danny finds that it is at wheelchair height and begins pounding on the sheet metal with his right arm. (He also does this when he gets near metal file cabinets or large cardboard boxes as a way to express his inner rowdy nature.) I let him bang on the metal until it gets so loud that some of the children look alarmed and begin staring. There is plenty of room in the greenhouses to move Danny past the temptation to bang on sheet metal, and so we move on. It's not nice to frighten the children.

On our way out we walk through a fine mist that periodically sprays water to humidify the tropical plants. Danny loves the hissing sound the sprayers make and also appreciates the warm dampness that surrounds him.

The botanical gardens are such a delight, that I would hate to spoil the experience by claiming that it does anything to improve Danny's status in the community or that it in any way dispels the notion that some people with disabilities have problems that can't be overcome by high expectations. Watching Danny's infectious joy is enough for us and we suspect that it has not gone unnoticed by our fellow fans of the Botanical Gardens.

A user's guide to Community Mental Health, Washtenaw County

"I go to meetings so you don't have to."

It has been almost two years since I began attending meetings of the Washtenaw Community Health Organization (Washtenaw County's Mental Health agency) and its various committees. Very often I am the only "outsider" there when important decisions affecting people with disabilities and their families are made. Fortunately, there are consumers of mental health services represented on the Board, but it still tends to operate on the abstract level of policy and funding and does not necessarily take into consideration factors you might feel are important.

There are many ways to make your voice heard. Every WCHO Board and committee meeting begins with an opportunity for public participation where you can say (almost) anything you want - it does not have to be on the agenda or otherwise under consideration by the Board. The meetings are formally run and as much as I may want to insert myself into the conversation during the meeting, that is not how things work. I have to stifle that impulse and plan to come back to raise issues that I think are important. Of course, discussions with staff and Board members before and after the meetings are always possible, and attending meetings regularly is a good way to find out who does what and who to talk to when specific questions arise.

The Executive Director of the WCHO, Patrick Barrie, is a former Deputy Director for the Michigan Department of Community Health. He knows a great deal about state policy, funding, and the politics of mental health services. His reports to the WCHO Board are informative and interesting, especially if you have a geeky need to know how the mental health system works.

The WCHO Board meets on the third Tuesday of each month at the Learning Resources Center at 4135 Washtenaw Avenue, Ann Arbor, near the intersection of Washtenaw Avenue and Hogback Road. Some of the items discussed at recent meetings include the restructuring of the WCHO organization to fix problems with the decentralizing and fragmentation of services and functions of the organization in recent years. For instance, Community Supports and Treatment Services (CSTS) had become an independent publicly-funded provider agency, but now it is coming more under the direct control of the WCHO to improve efficiency and control over services. Another issue is that after years of encouraging a greater choice in service providers for consumers, there are now too many providers for the WCHO to monitor effectively and there are questions about the efficiency of contracting with so many small providers.

Committee meetings that might be of interest to consumers include the Program Committee that meets monthly and the Quality Management Committee that meets quarterly. One of the issues facing the WCHO is getting a handle on whether the programs offered are of value to consumers and of sufficient quality to meet their needs. Part of the reorganization of the WCHO will provide the committees with information they will need to make this determination. In addition, the Finance Committee approves and oversees contracts with the WCHO and focuses on funding issues.

The Affiliation Committee is one of the most interesting to me, as it involves Board members and staff from Washtenaw County plus the three other counties (Lenawee, Livingston, and Monroe) in the Community Mental Health Partnership of Southeastern Michigan. State issues concerning mental health funding and policy come up frequently for discussion. The state organization representing Community Mental Health Boards, the MACMHB, comes in for some criticism with many CMH Boards feeling that the MACMHB does not do enough advocacy on behalf of local CMH's and has become instead a mouthpiece for the Michigan Department of Community Health. The Affiliation is evaluating its role in the MACMHB and will be offering recommendations for improvement of the organization. The Affiliation Committee also approves policy changes for the recipient rights office and assesses the overall fiscal health of the four mental health boards.

The Recipient Rights Advisory Committee meets quarterly to go over reports that analyze incidents of abuse, neglect, and exploitation of mental health consumers. The committee takes into consideration special areas that need scrutiny such as the under-reporting of incidents by service provider staff and incidents in supported living (unlicensed) settings. This committee also serves as an appeals committee to hear appeals brought by or on behalf of WCHO recipients regarding Rights investigations. The recipient rights committee members tend to touch on basic issues that we are all concerned about - the safety and well-being of our family members wherever they are receiving services.

For information about the WCHO Board and committee meetings, check the Washtenaw County Calendar of Events. The calendar includes meetings for all county government boards and committees.

To receive information on Board and committee meetings prior to the day of the meeting, e-mail Suzanne Gondeck at gondeks@ewashtenaw.org .

Oh, Danny Boy

Open house: Ann Arbor High School for students with high-functioning autism

This is from the March 2011 issue of A Different Path, a newsletter for families with school-age special needs children in Washtenaw County.

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Veritas Christi's Open House

Could Veritas Christi H.S. be right for a child you know?

If your child or a child you know struggles with distractions at typical schools, has trouble connecting with teachers in a large classroom or for whom social issues detract from their learning, then VCHS may be worth a look. Matthew Landrum, chair of the English department, says that currently no class has more than 5  students, and the school maximum is 8 per class.

He says the school has students diagnosed with Asperger's and others for whom the stress of a hundred kids in the hallway between classes was deterring their academics. He says there is more teacher attention, teachers stay after school and most students finish their home-work at school..

The Open House is 

March 20th (Sunday) and March 27th (Sunday) 

from 11 a.m. - 3 p.m.
410 S. Maple Rd., Ann Arbor, MI

The school is always open to visitors and more information can be found at the Veritas Christi Website.  

**********************

More on A Different Path: This is a newsletter that includes heartfelt articles by and for parents, siblings, and friends of people with disabilities. It also includes announcements of events and other valuable information. If you want to receive your own copy of this newsletter by e-mail attachment, contact beestange@comcast.net. 

This is all done by volunteers. Donations are always welcome. Send to:

Different Path
P.O. Box 8276
Ann Arbor, MI 48107-8276

Think Summer

A parent's impassioned plea to the ADD: Don't force my son to live by your rules!

These are comments submitted to the Administration on Developmental Disabilities by a Michigan parent:

I understand your passion to include people with disabilities into the fabric of our society. I commend your desire to reverse a long history of hiding these individuals away from public eyes out of shame and an unwillingness to accept the knowledge of their very existence.

Unfortunately - in your zeal to right this wrong and insist that persons with disabilities have rights and access to all the facets of society previously denied them - you are missing a HUGE point.

To force your solution on every person with a disability - regardless of their interests and VERY real, legitimate needs - YOU are doing the same thing - taking away the rights and choices of these people to NOT have to live the way you want them to.

Who are YOU - people who do not know my son - a wonderful, 20 year old, severely physically and cognitively disabled person who needs complete care - to say that he must be isolated from his peers by shuttering the doors of programs that are designed to engage him at his level! Who are you to say that a group setting for meeting his needs is inappropriate for him! His world is small because that is what works for him.

Trust me I know. For years I have imposed many of my expectations about his need for engagement and participation. I had him in full inclusion, I enrolled him in enrichment classes, I employed therapists beyond the school to help him reach higher. And while I am glad that we did this, and I think he did benefit for a while - the gap between his speed and capacity and the speed and capacity of the world around him became greater and greater. And it became clear that he was not happy with these activities.

Now he appreciates a self-contained class in school, or spends time with family or at a group center in our town. His world is much smaller - and slower and it is an excellent fit for him. This is where he has his needs met best and this is where he is happiest.

Your arrogance - that you know better what he needs and what is best for him and therefore have the moral authority to insist that this is not an acceptable setup diminishes him in the same way that world used to impose its expectations on people of this level of disability.

These revisions to close even small group homes and sheltered workshops DENY the very existence of my son. And the idealistic view that everyone can be a functioning participant in their own lives is not borne out in reality. For instance, I challenge you to meet him and teach him how he is going to have a bank account! Seriously? What are you talking about???

You insult him just as much as people who think too little of him by insisting that he can fit your model. Because that is just as much of a denial of who he is.

Again - I appreciate that your ideals are in the right place and that giving these solutions as options, even strongly encouraged options is great. But your perceived victory with these changes, eliminating legitimate options to meet the needs of this very real, very alive population will be a different kind of cruel for people like my son Alex.

I beg you to wake up and have more sense. Please do not deny my son or people who want and appreciate these environments to be forced to live by your rules.

Sincerely,
Annie Zirkel, mother and guardian of 20 year old Alexander Hagopian-Zirkel

Visit Annie's Website here and sample more of her writing.

 

COMMENT NOW on "Envisioning the Future" recommendations on developmental disabilities

Last Fall, the federal Administration on Developmental Disabilities (ADD) held Listening Sessions in five cities around the country to hear public testimony on "Envisioning the Future" for people with developmental disabilities and programs funded by the federal Developmental Disabilities Act. In Michigan, those programs include the Michigan Developmental Disabilities Council, Michigan Protection and Advocacy Services, and the DD Institute at Wayne State University in Detroit. State advocacy organizations, including the ARC Michigan, UCP Michigan, and the Michigan Disability Rights Coalition, are recipients of DD Act funding through grants from the Michigan Developmental Disabilities Council.

The day following each listening session, the ADD held a stakeholder's meeting to prioritize recommendations for future DD Act program activities. These meetings were by invitation only and were were not open to the public. Stakeholders are presumably the agencies and organizations that receive DD Act funding. Their recommendations are summarized in this document. 

Friday, March 4th, 2011 is the last day to submit comments on choice and other issues for people with developmental disabilities to the federal Administration on Developmental Disabilities Website.


Recommendations run amok
 
While many of the recommendations are reasonable and uncontroversial, some are decidedly anti-choice, calling for the elimination of congregate care and so-called segregated sheltered workshops (specialized community-based work programs) that many people with developmental disabilities need and want.

For example:  

Promote access to community living services - “Develop and implement plans to close public and private institutions and segregated workshops” (p. 12. Note: The DD Act, the Americans with Disabilities Act, and the Supreme Court Olmstead decision do not require that institutions or other congregate settings close. Neither are specialized work settings for people with disabilities singled out for closure.)

Collaboration - “ADD and the Administration on Aging should jointly plan and pool resources at the Federal and State levels while maintaining the DD Act values. Caution against taking on any values/programs that involve congregation and segregation” (p. 13. Note: Whose values are we talking about? Some of the values of DD Act programs conflict with the rights of people with developmental disabilities to participate in making decisions about their own lives and to choose services and living situations based on their individual needs and preferences.).

Community Living - “Keep people with disabilities out of congregate institutions” and “Harness the supports and influence of The Arc” (p.  14. Note: the ARC Michigan supports the elimination of all specialized programs that serve people with DD in disability-only settings. Why promote the influence of this one organization over others?)

Family Supports - "Guardianship should be assumed as an exception -- there should be legislation to protect people with developmental disabilities." (p. 16. Note: There already is legislation to protect people with DD. Guardianship is a state issue governed by state laws. In Michigan, guardianship law protects individuals from abuse, exploitation, and neglect while promoting the maximum independence appropriate. Many advocates in Michigan promote an ideology that dismisses the idea that anyone is in need of these protections through guardianship.)

Self-Determination - "Make self-determination the overriding foundation in DD Act. ADD and the DD network must promote self-determination clearly and explicitly, applying quality standards that are universal to all people through the network, across the lifespan. Self-determination equals citizenship and control of supports/resources." (p. 18. Note: Self-Determination, a process for gaining more personal control over services and financial resources, is optional in Michigan and for many that process is not the best way to achieve the goal of appropriate services to meet the needs of the individual. There are other pathways to citizenship.)


Despite public testimony to the contrary, there is no recognition in this document that there are people with developmental disabilities who may not be able to work in integrated employment, live in typical community settings, or make decisions for themselves. This is an example of how little understanding of cognitive disabilities there is among some "stakeholders" : 

Economic Self-Sufficiency - "Promote teaching all people with disabilities how to control their financial resources and supports (i.e., how to bank, file their taxes, how to control their resources for supports, how to open and maintain checking and bank accounts). This should apply to everyone, even if they have a severe disability." (p.20)

HOW TO SUBMIT COMMENTS:

1. To comment,  prepare a simple statement in support of your views and objecting to recommendations that you do not agree with. If you have more extensive comments, you can upload a Word Document along with comments you enter directly. Give your name, city, and state.
2. Go on-line (directions below) and submit your comments. Keep a copy of your remarks for future use. 
3. To post your comment BY FRIDAY, MARCH 4, click here.

Fill in the required boxes marked with the asterisk. 

Where it asks you to enter the title of your submission --- that is what will appear at the top of your submission.  Something like "Support the Right to Choose" or "One size does not fit all" will draw attention to the point you want to make.

To see other comments, click “What Others Have to Say” link

You can then type in your comments. There is no word limit. You can "copy and paste" into the comment section.  You can also attach (“upload your document”) your document. 

When finished, hit SUBMIT!.