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TO: NDSC Members and Parent Affiliates

FROM: Goodman, Director

Governmental Affairs

DATE: November 19, 2004

I.D.E.A. REAUTHORIZATION BILL TO BECOME LAW

On November 17, 2004, the IDEA reauthorization conference committee approved a

negotiated version of the House and Senate bill, now called Improving Education

Results For Children With Disabilities Act of 2003. It is being voted on today

in the House of Representatives. Some of the highlights of the negotiated bill

include:

· The bill retains the “manifestation determination” provision that states that

for non-drug, non-weapon, non-violent behavior schools must consider, in

disciplinary actions, if the behavior was related to the disability. However,

it eliminates important factors that must be considered in making this

determination that places a heavy burden on the student.

· The bill removes the current “stay-put” provision that enables a student’s

right NOT to have their education disrupted and to “stay-put” pending an appeal

if their parent challenges the allegation of misconduct or finding of No

manifestation.

· The bill makes it more difficult for parents to exercise their due process

rights.

· The bill retains short-term objectives for students taking alternate

assessments. This does not include a large number of students who would be able

to take regular assessments with accommodations and modifications.

We expect this bill will pass both the House and the Senate. Senator Jim

Jeffords (I-VT) was the only conference committee member to vote against the

conference report. The vote in the House of Representatives will occur today.

The vote in the Senate will take place soon, although the exact scheduling is

not currently known.

The next step will be for the President to sign the bill into law. The U.S.

Department of Education, Office of Special Education and Rehabilitative Services

will be the agency responsible for writing the regulations that implement the

new law. This is a very important step in the process because it is the “how

to” part of the law.

This law rolls back the rights of students with disabilities, as feared.

However, had it not been for the strong voices of parents, the final bill would

have been much worse. Our voices were heard – references were made by Senators

and Representatives during the final conference committee meeting about hearing

from parents and addressing their concerns. Our advocacy for students to

receive an education that prepares them for an independent productive life must

be as active as ever.

We will keep you posted as the law moves through the regulatory process.

Parents will need to continue to make their voices heard in this process so that

the regulations will not further deny our children’s rights. We will keep you

up to date on the developments.

If you have questions or comments, please e-mail g1961@.... We are

always glad to receive comments and answer questions.

[Guest guest]

wow I have to admit, our pediatrician was wonderful! I was given all kinds

of books and pamplets and several parents of children with DS came to visit

us in the hospital bringing their children for us to meet. I have to admit,

it wasn't until we started into the school system that all heck broke loose.

Carol

Trishasmom

She isn't typical, She's Trisha!

[Guest guest]

NDSC GA Newsline

NDSC RESEARCH NEWS

TO: NDSC Members and Affiliated Parent Groups

FROM: Sue Joe

Resource Specialist

DATE: January 3, 2005

Mothers Have Spoken: Physicians Need to Do a Better Job

in Delivering a Postnatal Diagnosis of Down Syndrome

Specific Recommendations Offered

A study released today by the medical journal, Pediatrics, and reprinted at the

NDSC website (www.ndsccenter.org), indicates that mothers of children with Down

syndrome are overwhelmingly dissatisfied with the way their doctors communicated

a diagnosis of Down syndrome. According to the survey of 2,945 mothers, doctors

routinely failed to provide up-to-date printed or oral information about Down

syndrome, potential positive outcomes for their child, or contact information

for other parents with children with Down syndrome. By almost every standard,

the mothers surveyed felt like their doctor had failed to make the birth of

their child with Down syndrome a positive experience.

The study was authored by Skotko, known to many as the leader of past NDSC

Brother/Sister Conferences. Skotko is a joint-degree student at Harvard Medical

School and Harvard’s F. Kennedy School of Government. His faculty advisor,

Dr. Crocker, is a member of the NDSC’s Professional Advisory Council and

has served on the NDSC Board of Directors and the NDSC Foundation Board of

Trustees.

This research study asked mothers to reflect on a central question: How could

medical support have been better when you received the diagnosis of Down

syndrome for your child? To answer this, mothers completed an 11-page survey,

which included a variety of topics: How did your physician deliver the

diagnosis? Were the verbal explanation adequate, the setting appropriate, the

language sensitive, and the printed materials helpful? What was it like to

receive the diagnosis?

The majority of mothers reported being frightened or anxious after learning of

the diagnosis, and very few rated the overall experience as a positive one.

Among the words that were used were shocked, angry, devastated, overwhelmed,

depressed, stunned, and helpless. The statistics revealed that mothers were

more apt to be fearful and anxious if their physicians emphasized the negative

aspects of Down syndrome when first delivering the diagnosis. Mothers were

frequently advised to put up their child for adoption, or chided for not having

prenatal testing, the survey found. Some mothers received the news too soon,

such as while having episiotomies stitched up. Although the worst instances

came from the 1980s and earlier and physicians improved over time, mothers still

reported insensitive comments as recently as the late 1990s and early 2000s. A

mother in 1997, for example, heard a doctor refer to her newborn as an “FLK”

(“funny-looking kid”); another who gave birth in 2000 reported, “The doctor flat

out told my husband that this could have been prevented or discontinued at an

earlier stage of the pregnancy.”

“Doctors have gotten better over time, but it’s been a very slow change, and

they’ve really gone from terrible to just bad,” says Skotko, who has a

24-year-old sister with Down syndrome and who, along with NDSC Board Member

Kidder, co-authored the award-winning book, Common Threads: Celebrating

Life with Down Syndrome (Band of Angels Press). “Finding out a diagnosis of

Down syndrome does not have to be a horrible process. In fact, the mothers in

this study explain how physicians can make it a positive experience. We hope

this paper will be a catalyst for increased dialogue among doctors.”

National Down Syndrome Congress President Judy Martz agrees. “Hopefully,

doctors will carefully consider the recommendations in ’s study. Parents

can help affect positive change in their communities by providing copies of this

research to local physicians and hospitals. A study published in a leading

medical journal will carry a lot of weight with most doctors.” Martz also noted

that the study gives parents the chance to educate their pediatricians and other

doctors on where to find accurate, up-to-date information. The NDSC National

Center provides free information and the resources of its renowned Professional

Advisory Committee through its toll-free hotline (800/232-6372) or via e-mail at

info@....

By analyzing the survey responses, Skotko developed a list of ten

recommendations for physicians when delivering a postnatal diagnosis of Down

syndrome:

(1) The person to deliver the news should be a physician. Mothers in this study

received the diagnosis from a variety of health care providers: pediatricians,

neonatologists, obstetricians, genetic counselors, nurses, and in two cases, the

lactation specialist and the candy-striper volunteer. Mothers felt that a

physician was the person most knowledgeable to present the diagnosis.

(2) Obstetricians need to coordinate their messages with neonatologists and

pediatricians. In many hospitals, mothers suggested that there was confusion

and, at times, disagreement over which physician was responsible for delivering

the news. Physicians from various specialties need to work collaboratively.

(3) The news should be delivered once the mother is settled and as soon as a

physician suspects the diagnosis. Some mothers were upset that they received

the news immediately, particularly while episiotomies were still being sutured.

Most mothers, however, were worried during what was described as a silence

period, where no health care professional would give them an honest answer about

what was going on. A physician should not wait until a diagnosis is confirmed

through karyotyping; mothers prefer to be aware of the physicians’ thought

process, no matter how difficult the news might be.

(4) Whenever possible, the physician should make the announcement with both

parents present, in a private setting. As the diagnosis of Down syndrome is

just as novel to the father as it is to the mothers, physicians should not

expect that fathers should be the ones to share the news with the mothers.

(5) When delivering the news about Down syndrome, the physician should first

congratulate the parents on the birth of their child. Mothers have recommended

that physicians include the positive aspects of Down syndrome in their first

descriptions of the condition. Many mothers mentioned that the best words used

by their physician during this initial explanation were, “Love your child like

any other child.”

(6) Health care professionals should keep their personal opinions to themselves.

Mothers have asked physicians to offer sound medical advice based on up-to-date

information, but not personal opinion.

(7) Mothers should be provided with up-to-date printed materials. Most new

parents were frustrated at either receiving outdated information or no

information at all. Mothers requested receiving complimentary copies of books

on Down syndrome that included positive imagery; or, in the cases where

hospitals were financially unable to do so, a bibliography listing the most

current resources for new parents.

(8) Parents should be provided access to other families who have children with

Down syndrome. First call programs—that is, support programs in which a parent

of a child with Down syndrome visits or phones one of the new mothers—were

mentioned as invaluable sources of help to the new parents. Hospitals and

parent support groups should work collaboratively to provide this requested

outreach to new parents.

(9) After the initial diagnosis or suspicion is shared with parents, they should

be offered a private hospital room. As mothers respond to the diagnosis with a

variety of emotions, many requested that they have a private space to express

those emotions.

(10) Physicians should be cognizant of the realities and possibilities of

growing up with Down syndrome. Simply put, Down syndrome is not just what was

taught in medical school. Mothers considered it the responsibility of doctors

to stay informed about the educational and social potentials of children with

Down syndrome.

NDSC Executive Director Tolleson notes, “Having this study published in a

major journal is a remarkable achievement for a medical student. We are proud

of our affiliation with and are grateful for his commitment to persons

with Down syndrome and their families.”

An analysis of responses from mothers who received the diagnosis of Down

syndrome through prenatal testing will appear in an upcoming issue of the

medical publication, American Journal of Obstetrics and Gynecology. Skotko has

promised to alert parents when this new study is released.

A summary of the Skotko report, as well as the full text, and a link to the

American Academy of Pediatrics, may be found at the NDSC website at

www.ndsccenter.org.

Financial support for this research was provided by the Tim White Fund from

Children’s Hospital Boston and a part-time research grant from Harvard Medical

School.

Some of the information for this release was provided by Skotko, who may

be contacted at _Skotko@.... Additional information

was provided by the Children’s Hospital of Boston (contact -Ellen Shay at

617/355-6420) and Harvard Medical School (contact Lacey at 617/432-0442).

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

Help Spread the News!

NDSC Research News is an excellent resource and one we encourage you to share

with your parent group affiliate, or personal, listserv.

Support Our Efforts to Promote Sound Research!

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

How to Join the NDSC

Founded in 1972, the NDSC is the oldest national organization for persons with

Down syndrome, their parents, siblings and the professionals who work with them.

The Congress is known for its advocacy, its encouragement of self-advocate

empowerment and leadership, as well as its many services, including Down

Syndrome News, the Governmental Affairs Newsline, Research News, hosting the

nation’s largest DS convention (scheduled for July 29-31, 2005 in Anaheim, CA)

and its toll-free information and resource hotline.

Annual dues are just $25, and may be paid online at www.ndsccenter.org; over the

phone at 800/232-6372; or by mail at 1370 Center Drive, Suite 102; Atlanta, GA

30338.

Please join us as we continue “Making a difference, one family at a time”!

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

If you have questions or comments, please e-mail sue@.... We are

always glad to receive comments and answer questions.

[Guest guest]

NDSC GA Newsline

Support the NDSC’s Advocacy Work!

Join Now!

GOVERNMENTAL AFFAIRS NEWSLINE

TO: NDSC Members and Affiliated Parent Groups

FROM: Goodman, Director

Governmental Affairs

DATE: January 12, 2005

Medicaid Efforts Continue

NDSC and other national organizations have joined Families USA in a letter to

President Bush urging the President not to cut Medicaid or make changes that

would alter the fundamental structure of the program. Reportedly, the

Administration’s budget proposal for fiscal year 2006 may attempt to limit

federal funding to states for the Medicaid program forcing cuts in eligibility

and all non-institutional services. Using the budget resolution process is an

indirect way to change the Medicaid program.

Tolleson, NDSC Executive Director, has also sent a letter to President

Bush. In this letter, he states:

“Medicaid is critical in covering long term care and supports for adults with

Down syndrome. For many of these individuals, their ability to live in the

community, to have access to transportation, to have support in a job where they

make a real contribution, are all funded through Medicaid. Block-granting or

capping funding will likely lead to a reduction in essential services for those

currently receiving Medicaid and denial to individuals who might be applying for

services in the future. Cuts or caps to Medicaid will have a devastating effect

on our most vulnerable citizens.”

If you would like to read the letter from NDSC to President Bush, go to

www.ndsccenter.org. The December issue of the Newsline includes a more

comprehensive discussion of possible legislative scenarios through which

Medicaid could be changed.

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

Below is a thoughtful piece written by Bob , Director of Advancing

Independence, who is a former Deputy Assistant Secretary for Disability in the

U.S. Department of Health and Human Services, Washington, DC. This article not

only talks about saving the Medicaid program but also discusses its current bias

toward institutional services.

Saving Medicaid Needs To Be About

More Than Settling For The Status Quo

By Bob

Progressives and Americans of good will from across the spectrum should heed

Bill Vaughan's clarion call to resist Bush's attempt to destroy the Medicaid

program. Not only is it the largest publicly financed health coverage program

in the U.S., Medicaid also can offer the most comprehensive prenatal, well

child, acute care and long term services benefits package benefits package of

any public or private plan in our nation. As such, it's an exemplar of the kind

of coverage that as progressives we should be working to make available all our

people, including the poor, the rich and everyone in between.

Medicaid is not without its flaws, however. One of these is what is called its

" institutional bias. " Simply put, Medicaid spends far more money

institutionalizing children, adults and older persons with disabilities than it

does to provide the needed services and supports to enable them to live in their

own homes and communities. Some progress has been made in remedying such gross

inequities. But, nationally about 70% of Medicaid long term care funds are

spent on nursing homes and other institutions. This is despite the fact the

vast majority of people with severe disabilities on Medicaid, including many

older people with Alzheimer's disease, live in the community.

A recent study found that of the roughly 3 million people with disabilities

living in the community who need assistance with eating, bathing and dressing

each day as many as one million do not get all the help they need. 80 percent

said they could not get dress everyday. 30 percent soiled themselves because

they had no other choice. And, more than one in 10 said they had gone to bed

hungry at least once in the last month for lack of help ( LaPlante, M.P., Kang,

T., Kaye, H.S., & Harrington, C. (2002). Unmet need for personal assistance

services among adults living at home. San Francisco, CA: Disability Statistics

Center. http://www.pascenter.org/publications/publication_home.php?id=23).

Those in nursing facilities fare little better and often far worse than this.

In fact, one federal investigation found that over 90% of the nursing homes

provide their residents with less than 3 hours of assistance with essential

tasks like eating, bathing, dressing, going to the bathroom, etc., each day

(U.S. the Department of Health and Human Services, Report to Congress:

Appropriateness of Minimum Nurse Staffing Ratios In Nursing Homes. 2000

http://www.cms.hhs.gov/medicaid/reports/rp700hmp.asp?).

Talk about throwing good money after bad.

As someone with a severe disability who has always gotten the assistance I need

to live in the community all my life and the son of a mother with dementia that

died in a nursing home not because she " needed to be there " but because there

was simply no other alternative, I am here to say that we must do better. This

is why it's so disheartening to hear Vaughan and others cite the financing of

nursing home care as the prime reason why we must preserve Medicaid " as we know

it. " There is much about the program that is vital and should be preserved and

strengthen. But, there is likewise much about it that simple justice demands be

changed. Ridding the program of its institutional bias once and for all tops

this list.

Senators Tom Harkin and the late Wellstone have led the good fight to do

this by introducing legislation known as the Medicaid Community Attendant

Services and Supports Act (MiCASSA) in every Congress in the last decade. Yet,

most in the progressive community have given the bill tepid support at best.

Preferring instead to endorse the status quo and thus, the needless

institutionalization, segregation and marginalization of millions Americans with

disabilities of every age, race and region of our country. We can and must

strive to do better.

If you have personal experience (positive or negative) obtaining services with

Medicaid funding, please send them to g1961@.... As we continue this

important task to protect Medicaid, these stories are invaluable to use with

legislators.

Help Spread the News!

The NDSC’s Governmental Affairs Newsline is an excellent resource and one we

encourage you to share with your parent group affiliate, or personal, listserv.

Support Our Advocacy Work!

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

How to Join the NDSC

Founded in 1972, the NDSC is the oldest national organization for persons with

Down syndrome, their parents, siblings and the professionals who work with them.

The Congress is known for its advocacy, its encouragement of self-advocate

empowerment and leadership, as well as its many services, including Down

Syndrome News, the Governmental Affairs Newsline, hosting the nation’s largest

DS convention (scheduled for July 29-31, 2005 in Anaheim, CA) and its toll-free

information and resource hotline.

Annual dues are just $25, and may be paid online at www.ndsccenter.org; over the

phone at 800/232-6372; or by mail at 1370 Center Drive, Suite 102; Atlanta, GA

30338.

Please join us as we continue “Making a difference, one family at a time”!

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

Holiday Note: NDSC’s National Center will be closed Monday, January 17, in

observance of the Luther King, Jr. Holiday. The Center will reopen at 9

AM EST Tuesday.

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

If you have questions or comments, please e-mail g1961@.... We are

always glad to receive comments and answer questions.

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

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NDSC GA Newsline

GOVERNMENTAL AFFAIRS NEWSLINE

TO: NDSC Members and Affiliated Parent Groups

FROM: Goodman, Director

Governmental Affairs

DATE: July 6, 2005

Supreme Court To Decide Important I.D.E.A. Case

Schaeffer v. Weast is a case brought in Montgomery County, land, under the

Individuals with Disabilities Education Act (IDEA) by the parents of a child

with severe learning disabilities. The parents of Schaeffer were forced

to pay for private school placement for their son because the Individualized

Education Program (IEP) offered by the school district was “insufficient to meet

his needs,” according to the Petitioner’s (parents) brief. The issue that will

be decided by the Supreme Court is:

If parents disagree with an IEP developed by the school, do the parents have to

prove that the IEP is not appropriate? Or, does the school that developed the

IEP have to prove that the IEP is appropriate?

The case began with the decision of an administrative law judge in 1998 who

stated that the burden of proof is on the parents and ruled in favor of the

school district. After the District Court heard the case, they decided that the

burden of proof is on the school district. Therefore, the school district must

prove the IEP is appropriate rather than the parents having to prove that it is

inappropriate.

After several hearings by an Administrative Law Judge, the District Court and

the Court of Appeals, the Court of Appeals reversed the district court on the

burden of proof issue, imposed the burden on the parents and remanded the case.

According to the brief filed by the Petitioner, Schaeffer’s parents:

Although graduated from high school in 2003, this case nonetheless

presents a continuing controversy because petitioners seek reimbursement for the

costs they incurred in providing their son the appropriate education services

that the school district refused to provide. These costs total thousands of

dollars for eighth grade alone.

You may read about this case in the June 30, 2004 issue of the Special Education

Advocate at http://www.wrightslaw.com.

Administration Supports School District Against Parents in Schaeffer

According to a Tuesday, June 28, 2005 Washington Post article, the Bush

administration has filed a brief in support of the school district. In a brief

filed Friday (June 24), U.S. Solicitor General D. Clement urged the high

court to uphold the latest Court of Appeals ruling when it hears the case in its

next term.

" Public officials, including public school officials, are presumed to act in

good faith compliance with their legal obligations, " Clement said in the brief.

" Thus, where, as here, a party alleges that those officials violated their legal

duties, the complaining party generally bears the burden of proof. "

This is a reversal from the Clinton Administration that, in 2000, filed a brief

in the same case when it was heard by the Court of Appeals on appeal from the

first ruling in favor of the parents. The Solicitor General, who filed the

Administration’s brief, stated in the brief, that the previous Administration

held a different view.

The case will be heard after the Court convenes for its fall session in October,

2005.

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

Help Spread the News!

The NDSC’s Governmental Affairs Newsline is an excellent resource and one we

encourage you to share with your parent group affiliate, or personal, listserv.

Support Our Advocacy Work!

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

How to Join the NDSC

Founded in 1972, the NDSC is the oldest national organization for persons with

Down syndrome, their parents, siblings and the professionals who work with them.

The Congress is known for its advocacy, its encouragement of self-advocate

empowerment and leadership, as well as its many services, including Down

Syndrome News, the Governmental Affairs Newsline, hosting the nation’s largest

DS convention (scheduled for July 29-31, 2005 in Anaheim, CA) and its toll-free

information and resource hotline.

Annual dues are just $25, and may be paid online at www.ndsccenter.org; over the

phone at 800/232-6372; or by mail at 1370 Center Drive, Suite 102; Atlanta, GA

30338.

Please join us as we continue “Making a difference, one family at a time”!

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

If you have questions or comments about this Newsline, please contact

g1961@....