Re:Retention and some other individual decisions vs research

[Guest guest]

& others,

In my opinion, what this discussion reinforces is that research is great but decisions must be made on an individual by individual basis. Research "informs" and the opinions of others can be so valuable, but individual needs, preferences, and choices should be determinative. That goes for school issues and for post school (rest of life) issues. I held my daughter back for one year in elementary school (in NYC) and one year in middle school here in Palm Beach County. The retentions were in fact valuable, both academically and socially, and she still graduated from high school three months before her 21st birthday. While I would have liked her to stay in school through her 22nd year (which would have given her (me) two more years before facing who knew what.......transition to nowhere?) she wanted to be done with school.......and I had to respect that. She had worked very hard and the last two years were very difficult for her and she wanted to graduate and "get a job". So, now, about the job.........she likes her part time job in the community.........and I am struggling a great deal to respect that because I have fears (reality based fears) about the risks of kids "like her" being in the typical world, quite a dangerous place actually. I have made much preparation in this area and take many precautions, but when I drop her off at work, I am terrified. I dwell a great deal on the issue of "failure to protect" and how to balance somewhat freedom and protection for a quite vulnerable person. Again, there is research "out there" about letting go and how growth entails taking risks, and how natural supports on the job should and sometimes work......and yet, while I continue to look to others for their thoughts and what they are doing with their own kids, whatever decisions are made with respect to my daughter continuing to work in a typical environment vs a more protected one will be made on an individual basis, specific only to my daughter, her preferences, her capabilities, her challenges and our evaluation of the risks (for this is the part she does not "get"), the risks in the real world as it exists, not as others think it should or could be, but how it is, really. Then there are the complex issues of where she will live and what her life will be like when she no longer lives in our family home (we are older parents and nobody can be around forever plus she has already asked expectantly "when will I be moving in with friends"?). Though she has been in inclusion settings her entire life, it is notable that the people she has chosen as her friends are people who are similarly disabled. She has chosen them and they have chosen her. Who am I or anyone else to tell her who her friends should be or what activities and interests she should enjoy, or where she "should" be living.......and what a "community setting" shall be for her ....based on what?? other people's "definition" of community, not based on what she experiences as community........but based on well, frankly, other people's social agendas, what they "hope" the world will be like "someday" when their children become adults and oh, of course based on "research" and "best practices" and "history has shown" and "a future where all" and so on and so on. Well, none of this "stuff" is relevant to my daughter. She is an adult now. Their future is her today. She has no agenda. She simply wants a life, a safe and happy life doing things she enjoys with people she prefers. Just like most of us, really. And just like us, my daughter has the right to live in a neighborhood that she feels comfortable in with neighbors who are real friends with whom she can share a life, and she should not be restricted to living amongst people on a block somewhere who at best "accept" her and the other people with disabilities who live in the third house on the left, in their community, not hers. Her life, her way. Others need not intrude.........even those carrying sacks of research and chanting "we are the professionals, we know better than you, even though we don't know you, we will tell you what to do". No thanks.

So, back to my point, research and the opinions and experiences of others can inform and help us think things through, but research should not be used to dictate what decisions should be made in any individual situation. My experience, it is never that easy, it is never black or white. Personally, over the years, I have learned to be wary of anyone who tells me what I "should" do based on all that "stuff", and moreso of people who would impose their expertise on us to our detriment. We know our children best. We can make decisions that are best for them and over time make those decisions with them until and if the day comes, and may it come to all of us, that they don't need our help at all in making their own choices for themselves. Choices that will be respected and supported.

This is my view, the view of a mom with an adult daughter on the spectrum.

Lucille

Hello ,

You have an older child and have seen more than some of us, me included. Do you believe that what happened was that Noah really got it the second time around or something was modified, adjusted... I do believe that more often than not, it is more of the same (from my own personal experience, my son is only 5).

Obviously not to say that it never works out, your son's is a success story, maybe we'll read others.

Gabi

Sent from my iPhone

On Jun 6, 2010, at 8:36 AM, " Karp" <denisekarpmyacc (DOT) net> wrote:

This is a very interesting discussion, especially all the citations stating how retention is not desirable.

When Noah was in 3rd grade I was told if he didn’t do well on the FCATs he would be retained. I was horrified at the thought of him being held back a year, so instead of having him take the FCAT that year (I think it was math), I kept him home from school on the testing as well as the make-up days. At that point there was another criteria used, some arcane conglomeration of present work and other testing, and the result was the same. I lobbied the principal, North area, I think I even went to the school board, but in the end he had to repeat 3rd grade. Along the way several people told me he’d be better off staying in elementary school another year, and I ignored them.

I can tell you now that I believe Florida Lizzie is absolutely correct, being retained was the best thing for Noah and I have to believe for many other ASD kids as well. The extra year of maturity really helped him, he’s emotionally much more compatible with those typical kids who are younger than him. Also, the nurturing environment of the autism clusters found in the elementary schools has no real counterpart in the middle and high schools yet. Our kids can legally stay in the school system until age 22; for many if not most of them, what’s the point of rushing them through the lower grades? For the person who said, if failed strategies to teach the kids didn’t work the first year, why would they work a second year, I can tell you that that is exactly what happened, the second time around in 3rd grade Noah “got†the math he couldn’t understand before.

From: sList [mailto:sList ] On Behalf Of HawkSent: Saturday, June 05, 2010 6:20 PMTo: sList Subject: Retention and parent conferences

MOST children should NOT be retained. It has been shown that there is no real benefit to retention and actually harms students. FACTSStudents rated grade retention as the single most stressful life event, higher than the loss of a parent or going blind. Retained students are less likely to receive a high school diploma by age 20, receive poorer educational competence ratings, and are less likely to be enrolled in any post-secondary education program. Retained students receive lower educational and employment status ratings and are paid less per hour at age 20.You can find more information here and read papers published studying this. More available here http://www.wrightslaw.com/info/retain.index.htm

On Sat, Jun 5, 2010 at 9:51 AM, Lizzie Berg <floridalizzie> wrote:

I recently met a parent who is in stunned because her kid;s teacher suggested retention next year. Here is what I think:

The students have the right to stay in elementary school from K through 5, which is 6 years, right? ESE kids have the right to stay another 2 years before they have to, by law, move to middle school. Most cluster students do not meet promotion criteria because they are below grade level academically. General education (gen.ed.) students who do not have a disability and who do not receive services at school will not be promoted if they do not meet criteria. This is not up for debate, the teachers and the parents do not have an option here. The students need to be retained. Typically this is done in kindergarten or first grade. It is also commonly done in third grade for various reasons. Gen ed students who are retained are often evaluated to see if their is a more serious underlying problem here. Some children in kindergarten are simply immature and they catch up soon. Others have a learning disability and need more intense instruction.

The goal is that by the time the students leave the elementary school, they should hopefully be able to perform academically at fifth grade level. They should be able to read and write like a fifth grader.

Cluster students and other ESE kids have the right to be retained two years in elementary school. It is your teacher's responsibility to explain this to you, and in my opinion, they should be held responible for giving you a copy of the promotion criteria.

I cannot understand why parents of cluster students are in a hurry to get them out of elementary school and into middle? Why???

You can ask them to retain your child any school year. If you are not sure what to do, retain again in 5th grade.

If nobody at your school has suggested retention, there is something very wrong with your school. It is in our county;s and community's interest that all students receive the maximum learning gains possible while they are in elementary school.

All parents should by now have finished their spring teacher-parent conference. This conference should focus on 2 things: academic and social progress, and promotion versus retention. The conference form that you get a copy of should say somethng like this" Retention discusses, the parents would like ______, and therefore X will be in so and so grade next school year". If you want him to be promoted the conference form should say something like this: "retention discussed, and the parents want X to be promoted due to good cause".

Cood Cause: ESE kids (and others) cannot be retained more than 2 years. Therfore they will be promoted no matter what. The promotion crteria will be waved, and the child is promoted due to something that is called "Good Cause". If you retain him in kindergarten for a year, he has to move to first grade next year. You can retain him again in first year, but after that he has to move up no matter what.

If you have not been invited for a spring conference, there is something very wrong with your school,. This is a red flag. You should by now have the copy of your conference form in your hand or you should have it filed in your big binder.

The teacher has to have a minimum of 2 conferences with you each year. This is state law. In my opinion, you should request no less than 4 conferences, one for each marking period. You receive the progress report and report card ina yellow envelope eah marking period, right? There is a line outside the on the envelop that you need to sign, and next to it is a question that you should answer: "Do you want a conference" I can't imagine why you would say no right then. Why? And if you don't get they paricular envelope, I strongly suggest that you request your conference right then!!!

When I read about all the nonsense that takes place in our schools, I want to cry. One way to fix this is by empowering and encouraging the kids' families. The best ammunition so to say, is to be more informed about the educational system. It is great to know a lot about the law, but it is equally important to know how things work in real life. Families and friends of ASD kids who take this seriously need to get their "a-- in the class". Four conferences a year is a must. Let's start this next year.

If you have specific questions related to your school that I may be able to help you with, just e-mail me privately. Make up a fake name if that helps. This is about the kids and their education, not who is who in the community.

Liz

From: Karp <denisekarpmyacc (DOT) net>To: <deniseslist >Sent: Thu, June 3, 2010 8:45:26 PMSubject: FDDC: $60 Million in Grants Available

From: Florida Developmental Disabilities Council [mailto:vandab@ fddc.org] Sent: Thursday, June 03, 2010 4:17 PMTo: denisekarpmyacc (DOT) netSubject: $60 Million in Grants Available

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FOR IMMEDIATE RELEASE Contact: HHS Press OfficeThursday, June 3, 2010

Announcement from the

Florida Developmental Disabilities Council

For more information, please contact

HHS Press Office *

HHS announces availability of $60 million in Affordable Care Act Grantsto help people navigate their health and long-term care options

HHS Secretary Kathleen Sebelius announced the availability of $60 million in Affordable Care Act grants to states and communities to help individuals and their caregivers better understand and navigate their health and long-term care options. Through this opportunity made possible by the Affordable Care Act HHS' Administration on Aging (AoA) and the Centers for Medicare & Medicaid Services (CMS) will work collaboratively to award funds for an integrated approach that focuses on the unique needs of seniors, disabled Americans and their caregivers as they seek health care and long-term care. "The Affordable Care Act seeks to lower health care costs, improve the quality of health care and perhaps most importantly give people more control over their own care. These new grants, authorized under the new law, will help seniors, individuals with disabilities and their families get better quality care and more control. We've also streamlined the process for states and people who rely on these funds," said Secretary Sebelius. "We know how difficult it can be for caregivers and patients to try and deal with a sudden illness or chronic disease while at the same time trying to navigate through a complex health care system to figure out where you can get help. These new funds that we have bundled together will help promote better opportunities for coordination of health and long-term supports," said Sebelius. The purpose of this new grant program authorized by the Affordable Care Act is to create streamlined, coordinated statewide systems of information, counseling, and access that will help people find consumer-friendly answers they seek to meet their health and long-term care needs. AoA and CMS will administer the funding through separate announcements, but will coordinate implementation and monitoring through a single process. Some specific areas of focus will include assisting individuals who are under-served and hard to reach with information about their Medicare and Medicaid benefits, helping older adults and individuals with disabilities live at home or in settings of their choosing with the right supports, assisting people transition from hospital or nursing home stays back into the community, and strengthening linkages between the medical and social service systems. "When it comes to long-term health care, each patient has a unique mix of complex medical and social needs that must be considered when seeking care," said Marilyn Tavenner, acting CMS administrator. "Our health care system can offer many options to meeting those needs from traditional nursing home care to home and community-based services. Making patients and their families aware of these options will help them make inherently difficult decisions about long-term care. This integrated program will help families make informed choices and make sure patients have more control over their own care." AoA and CMS have provided grants to states for several years to develop person-centered systems of information, counseling and access to make it easier for individuals to learn about and access their health and long-term services and support options. This grant program through the Affordable Care Act strengthens and enhances the ability of states to truly integrate the medical and social services care models. "AoA's national network of community-based organizations has long served as the central place for individuals and families seeking information and help to address health and long term care challenges. This collaborative opportunity between AoA and CMS will further strengthen the network's capacity to help people in a more coordinated and comprehensive way in the communities where they live," said Kathy Greenlee, assistant secretary for aging. Funds will be available to states, area agencies on aging (aaa's), State Health Insurance Assistance Programs (SHIPs) and Aging and Disability Resource Centers (ADRCs). Through the grant program, states and local aging and disability programs will receive funds to: *provide outreach and assistance to Medicare beneficiaries on their Medicare

benefits including prevention; *use additional funds through a competitive process to

provide Options Counseling on health and long-term care through ADRCs; *use additional funds through a competitive process to strengthen the ADRCs role

in Money follows the Person program and support state Medicaid agencies as

they transition individuals from nursing homes to community-based care; and *coordinate and continue to embed tested Care Transition models that integrate

the medical and social service systems to help older individuals and those with

disabilities remain in their own homes and communities after a hospital,

rehabilitation or skilled nursing facility visit. "CMS and AoA share a long-standing goal of expanding access to community-based care for the elderly and individuals with disabilities. The Affordable Care Act provides significant resources for state Medicaid agencies and providers to balance the nation's long-term care systems and assure that individuals have a choice of where and how they receive their services," said Mann, director of CMS's Center for Medicaid, CHIP, and Survey and Certification. The announcement combines funding opportunities from several provisions in the Affordable Care Act signed into law by President Obama on March 23, 2010,including the Role of Public Programs (Title II, Sections 2403 - Money Follows the Person and 2405 - Funding for Aging and Disability Resource Centers) and Improving the Quality and Efficiency of Health Care (Title III. Section 3306 - Funding for Outreach and Assistance for Low-Income Programs). These grants also complement President Obama's "Year of Community Living Initiative," which focuses on better serving those individuals with disabilities who need ongoing services and support programs in the community such as those provided by AoA, CMS and other HHS agencies. The deadline for applications is: Monday, July 30, 2010. Grants will be awarded in September 2010. For more information about this grant opportunity, please visit http://www.aoa. gov/AoARoot/ Grants/Funding/ index.aspx or www.grants.gov. To learn more about the Affordable Care Act, please visit www.healthreform. gov. Note: All HHS press releases, fact sheets and other press materials are available at http://www.hhs. gov/news.

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