Re: An opportunity to be heard/Sara

[Guest guest]

Hi Sara, could you please email me re this organization & this info. I'm

wanting to get involved & help be the change on a much larger scale now. Thanks!

Kris

>

> >

> > To Left Behind in America/Florida and NOEWAIT

> >

> >

> >

> > From Mike Coonan

> >

> >

> >

> > RE An opportunity to be heard

> >

> >

> >

> > The federal Administration on Developmental Disabilities is looking for

> > your input as families from the Medicaid Waiver waiting lists. They are

> > planning for the future of the DD system. They are holding hearings across

> > the country and there is a web site in which you can add your voice about

> > the waiting lists as it affects you and your loved ones. This is a unique

> > opportunity.

> >

> >

> >

> > Go to http://www.envision2010.net/comment_submit.php

> >

> >

> >

> > This is what I submitted.

> >

> >

> >

> > " Medicaid Waiver for people with developmental disabilities, waiting list

> > are out of control. Between 300,000 and 500,000 families across the country

> > are on these waiting lists and have been on them for years, with no end in

> > sight. Many State DD Councils do not have family members from the waiting

> > lists as council members. When these DD Councils do not make eliminating

> > the waiting list a priority, they are not allowed to fund projects to

> > support families and other groups trying to eliminate waiting lists.

> >

> >

> >

> > In Florida, 40% or more eligible for Medicaid Waiver DD services have been

> > waiting for the last 7 years. It is vital that plans are made for a new

> > future for people with developmental disabilities by including the families

> > on the waiting lists. The first order of business is to take care of all of

> > us and end these waiting lists. "

> >

> >

> >

> > It is vital that you submit your own views on their subject. Please check

> > out their web site at http://www.envision2010.net/comment_submit.php

> >

> >

> >

> > A little background, I was asked by the federal Commissioner on

> > Developmental Disabilities, Sharon to meet with her a few weeks ago,

> > to talk about the waiting lists. During our meeting, I gave her our

> > blueprint for moving forward. I gave this idea to NOEWAIT's Steering

> > Committee. They like the idea of a national conference and they are

> > considering a conference at the Family Cafe in Orlando, if it can be

> > funded and organized in time for their June Conference.

> >

> >

> >

> > *Left Behind in America* is being organized. We are creating our advisory

> > committee and we are working on fund raising. The following is the path

*Left

> > Behind in America* is taking to eliminate our waiting lists.

> >

> >

> >

> >

> >

> > *Left Behind in America *

> >

> > *8693 Meadowbrook Drive*

> >

> > *Pensacola, FL 32514*

> >

> > * *

> >

> > * **

> > mikecoonan@...* * *

> >

> >

> >

> >

> >

> > September 27, 2010

> >

> >

> >

> > Sharon Commissioner Administration on Developmental Disabilities

> >

> > Administration on Developmental Disabilities

> > Administration for Children and Families

> > U.S. Department of Health and Human Services

> > Mail Stop: HHH 405-D

> > 370 L'Enfant Promenade, S.W.

> > Washington, D.C. 20447

> >

> >

> >

> > Dear Sharon,

> >

> >

> >

> > Thank you for meeting with me. We appreciate hearing about your concerns

> > for families who have children with intellectual disabilities, autism,

> > cerebral palsy and related conditions who are on waiting lists. While

> > driving 6 hours from Pensacola to Orlando to meet with you, I had time to

> > reflect about our collective hopes for this meeting. To be perfectly honest,

> > I feel the weight of those who have nothing and are powerless on my

> > shoulders.

> >

> >

> >

> > This first meeting is a huge step forward for the *Left Behind in America*,

> > and is a spark of hope for the 600,000 families on waiting lists in

> > America. Most of us have been waiting for years. As President Obama's

> > appointed Commissioner on Administration on Developmental Disabilities, we

> > believe you are the right person for the job to help us eliminate waiting

> > lists, and thereby create a future for people who now have no future.

> >

> >

> >

> > To put together one major part of the waiting list puzzle requires a

> > commitment by you and the Administration on Developmental Disabilities. To

> > that end, we are asking that you direct the Administration on Developmental

> > Disabilities (ADD) to examine the issues surrounding national Medicaid

> > Waiver waiting lists for people with developmental disabilities.

> >

> >

> >

> > The process will requires a number of steps to focus attention on the

> > people with a developmental disability who are waiting. We want it to

> > conclude with an Institute of Medicine (IOM) nationwide study of the

> > Medicaid Waiver program for people with developmental disabilities. It is

> > our hope that the IOM study will provide Congress and the general public a

> > clear description of the scope of the problems adversely affecting all

> > people with a developmental disability in America.

> >

> >

> >

> > This study will also provide language for Federal legislation creating a

> > National Developmental Disability Service System (NDDSS) and the methods for

> > paying for this system. NDDSS will provide a single definition of

> > developmental disability. It will provide a means for creating

> > accountability for a system with continuity of care, treatment, and support

> > in the least restrictive manner. This effort will eliminate the waiting

> > lists while at the same time provide for the portability of DD services from

> > state to state. Just as important, there will be built-in safeguards for

> > the accountability and efficiency of services.

> >

> >

> >

> > We understand that this is a huge project. We know we are a long way from

> > our goal. However, we are not asking ADD to re-invent the wheel. Actually,

> > we are asking ADD to follow in the footsteps of the National Citizens

> > Coalition for Nursing Home Reform (NCCNHR) as they began to reform the

> > nursing home industry. This is what they accomplished:

> >

> >

> >

> > " *For more than thirty years the quality of care in nursing

> > homes has been a recurring matter of public concern and debate in

the

> > United States. In the 1970s and 1980s researchers presented compelling

> > evidence that the frail and vulnerable recipients of nursing home care

> > were too often neglected, mistreated, or abused and that the system of

> > nursing home regulation and licensure was largely ineffectual,

> > failing to protect residents and to prevent quality

problems.**1*<http://content.healthaffairs.org/cgi/content/full/20/6/128#R1>

> > * In 1986 the Institute of Medicine (IOM) published an influential

> > report that set out detailed recommendations for reforming the regulation

> > of nursing homes, intended to bring about a major improvement in

> > quality of

care.**2*<http://content.healthaffairs.org/cgi/content/full/20/6/128#R2>

> > * Those recommendations were largely accepted by Congress,

> > enacted through the Nursing Home Reform Act as part of the Omnibus

> > Budget Reconciliation Act (OBRA) of 1987, and have since been

> > gradually implemented by the Centers for Medicare and Medicaid Services

(CMS,

> > formerly

HCFA).**3*<http://content.healthaffairs.org/cgi/content/full/20/6/128#R3>

> > * http://content.healthaffairs.org/cgi/content/full/20/6/128*

> >

> > * *

> >

> > *Left Behind* is following NCCNHR's footsteps as far as we can. We

> > understand we are taking our first steps. This is why ADD is vital in our

> > efforts. The waiting lists and the problems with portability of services is

> > simply a by-product of a dysfunctional DD system. We propose to fix the DD

> > system, which will eliminate the waiting lists problems.

> >

> >

> >

> > *The First Step*

> >

> > * *

> >

> > *Left Behind in America* is being formed and is an outgrowth of *Left

> > Behind in Florida* which has been operating for several years. We

> > represent thousands of families on the waiting lists, plus those folks

> > getting services, as well as a coalition of providers who have signed our

> > petition. We are also working with NOEWAIT and the various State End

> > Waiting Lists Campaigns that are largely funded by state DD Councils and the

> > Protection and Advocacy Systems. We have developed a position paper for

> > ending the waiting lists and specific preliminary recommendations that

> > require Federal legislation.

> >

> >

> >

> > *The Second Step *

> >

> > * *

> >

> > We have a position paper and a report entitled, " *We are Invisible* " ,

> > which describes some of the underlying reasons causing the waiting lists to

> > continue to grow out of control. We are also connected to several " End the

> > Waiting Lists Campaign " web sites and discussion groups which provides for

> > community organization and information sharing.

> >

> >

> >

> > *The Third Step *

> >

> > * *

> >

> > *Left Behind in America* will hold a press conference to lay out our

> > agenda. When we are ready we will have notables who will command interests

> > in our cause. We will ask you, as the Commissioner of the Administration on

> > Developmental Disabilities, to attend. (*NCCNHR's first press

> > conference was attended by Dr. Arthur Flemming, Commissioner on Aging.*)

> >

> >

> >

> > *The Fourth Step*

> >

> > * *

> >

> > We require more resources for local and state member groups to make a

> > stronger national network. *Left Behind* has State Coordinators and a

> > National Coordinator to organize their efforts. All are volunteers. We need

> > more help. (*NCCNHR obtained 40 VISTA volunteers and placed them at 13

> > sites to support their effort.) *

> >

> > * *

> >

> > *The Fifth Step *

> >

> > * *

> >

> > We will hold annual national conferences. They will be sponsored by *Left

> > Behind* and we are asking ADD to fund these conferences. These events

> > will allow for the first time the 30 to 50 End the Waiting Lists Campaign

> > leaders to formulate the next steps in our effort to eliminate the waiting

> > lists. We will ask Obama to address our first conference. (*NCCNHR

> > had Rep. Claude Pepper, Chair of the House Select Committee on Aging to

> > address their* *conference*.)

> >

> >

> >

> > *The Sixth Step*

> >

> > * *

> >

> > Following these conferences, *Left Behind's* coalition of advocates and

> > providers will produce * " A Statement of Principles for the National

> > Developmental Disabilities Service System. " * (*NCCNHR produced A Consumer

> > Statement of Principles for the Nursing home Regulatory System.) *

> >

> > * *

> >

> > *The Seventh Step *

> >

> > * *

> >

> > The Institute of Medicine (IOM) will conduct it's study about the

> > Medicaid-funded developmental disabilities system in America. *Left

> > Behind* members will participate in briefing and work sessions conducted

> > by IOM. The IOM report will provide a pathway to create a national

> > developmental disability service system (*Responding to NCCNHR's

> > statement and Congressional directives, the Institute of medicine (IOM)

> > launched a study of nursing home regulations. IOM study committee members

> > invited NCCNHR to several briefings and work sessions and commissioned two

> > NCCNHR papers on resident and consumer participation*.)

> >

> >

> >

> > *Administration on Developmental Disabilities Mission Statement*

> >

> > " To improve and increase services to and assure that

> > individuals with developmental disabilities have opportunities to

> > make their own choices, contribute to society, have supports to

> > live independently, and are free of abuse, neglect, financial and sexual

> > exploitation and violations of their legal and human rights. "

> >

> > By any measure, ADD's mission statement does not apply to the 600,000

> > people with developmental disabilities across the country who are on waiting

> > lists. Many of us are fighting for a change. We are fighting for

> > recognition. Together with you we can face this huge challenge. We take

> > comfort from President Obama's words:

> >

> > " The true test of the American ideal is whether we’re able to

> > recognize our failings and then rise together to meet the challenges of

> > our time. Whether we allow ourselves to be shaped by events and

> > history, or whether we act to shape them. "

> >

> > Left Behind in America intends to shape the future for our children. We

> > are seeking change in Federal policy and a change in the hearts of our

> > policy makers. As President Obama said:

> >

> > * " Change will not come if we wait for some other person or

> > some other time. We are the ones we’ve been waiting for. We are the

> > change that we seek. " *

> >

> > Please help us in our fight. Please give our children a future.

> >

> >

> >

> > Sincerely,

> >

> >

> >

> > Mike Coonan (Parent on the waiting list)

> >

> > Left Behind in America

> >

> >

> >

> >

> >

>

>

>

> --

> Sara- different pathways lead to Nirvana.

>

>

>