Comments to HHS (New Freedom)

<body topmargin=0 leftmargin=0 marginheight=0 marginwidth=0> <table cellpadding=0 cellspacing=0 border=0 height="100%"><tr> <td valign="top" width=160 BGCOLOR="#FFFFFF" TEXT="#080000"> <div> <A HREF="id35.htm" TARGET="_top" TITLE="New Freedom Initiative Public Input"><U><B><IMG SRC="0020e0e0.png" border=0 width="14" height="14" ALT="up" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></B></U></A><B>      </B><A HREF="id33.htm" TARGET="_top" TITLE="National Teleconference Testimony"><U><B><IMG SRC="0010e0e0.png" border=0 width="14" height="14" ALT="previous" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></B></U></A><B>  </B><A HREF="id37.htm" TARGET="_top" TITLE="National Listening Session"><U><B><IMG SRC="0030e0e0.png" border=0 width="14" height="14" ALT="next" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></B></U></A><B>       </B><IMG BORDER="0" SRC="1x1.gif" HEIGHT="14" ALIGN="BOTTOM" HSPACE="0" VSPACE="0" WIDTH="14"></div> <bR> <div> <A HREF="id33.htm" TARGET="_top" TITLE="National Teleconference Testimony"><U>National Teleconference Testimony</U></A></div> <div> <B>Comments to HHS (New Freedom)</B></div> <div> <A HREF="id37.htm" TARGET="_top" TITLE="National Listening Session"><U>National Listening Session</U></A></div> <bR> <bR> <bR> </td> <td valign="top" BGCOLOR="#FFFFFF" TEXT="#080000"> <div> <B>National Coalition on Self-Determination</B></div> <div> <B>Speaking out for Freedom</B></div> <div> <FONT SIZE="3" COLOR="#0000FF" FACE="COMIC SANS MS" ><I><B>T</B></I></FONT><FONT SIZE="2" COLOR="#0000FF" FACE="COMIC SANS MS" ><I><B>he only national p</B></I></FONT><I><B>artnership of people with disabilities, parents, and family members who work to promote federal policies that support the five principles of Self-Determination -</B></I><I><B>self-advocacy,</B></I><I><B> freedom, authority, responsibility, and support and the values of the Community Imperative - a declaration asserting the fundamental human right of all people, regardless of the severity of their disabilities, to community living.</B></I></div> <bR> <bR> <bR> <div> <B> <TABLE BORDER="0" CELLPADDING="2" CELLSPACING="1" WIDTH="595" BORDERCOLORLIGHT="#C0C0C0" BORDERCOLORDARK="#808080" FRAME="BOX" RULES="ALL" HSPACE="0" VSPACE="0" > <tR> <tD VALIGN=TOP HEIGHT= 7914 WIDTH="589"><div> <B>National Coalition on Self-Determination</B></div> <div> <B>Speaking out for Freedom</B></div> <bR> <bR> <div> August 27, 2001</div> <bR> <bR> <DIV ALIGN="LEFT"></DIV> <div> <B>Comments on Removing Federal Barriers to Community Living</B></div> <bR> <div> The National Coalition on Self-Determination (NConSD) is the only national partnership of people with disabilities, parents, and family members who work to promote federal policies that support the five principles of Self-Determination and the values of the Community Imperative. </div> <bR> <div> Our organization welcomes the opportunity to comment on "Removing Federal Barriers to Community Living" that impact on people with disabilities' freedom to exercise the same rights as all citizens and to advocate for themselves. </div> <bR> <div> Through a collaborative process, the NConSD Board of Directors has identified the following priorities among Federal Barriers to Community Living:</div> <bR> <div> <B>I.     Self-Determination/Consumer Control</B></div> <bR> <div> <B>RECOMMENDATION ONE: </B></div> <bR> <div> <B>1. Develop or expand self-determination or consumer control programs, such as Cash and Counseling</B></div> <bR> <div> <B>2. Change the provision that Medicaid prohibits payment to family members to allowing family members to be paid. [i.e. family who is legally responsible for the individual- such as parent of a minor child or spouse] for Personal Care Services [see 42 CFR 440.167] </B></div> <bR> <div> All people are entitled to live, work, and play in the community, regardless of the severity of their disability. NConSD believes people with disabilities should have the authority to control whatever sums of money are needed for one's own support. They must be afforded the opportunity to responsibly use public dollars as they organize their own resources. One way to achieve these goals is to increase fiscal incentives to the states to support self-determination and consumer controlled initiatives. States are much more likely to fund programs during the budgetary process when they are tied to Federal Financial Participation (FFP). Federal laws, regulations, and policy must be crafted to attach funding to the individual to offer TRUE control and REAL CHOICE. </div> <bR> <div> <B>II.     Institutions</B></div> <bR> <div> <B>A. Intermediate Care Facilities for People with Mental Retardation (ICF/MR) Program </B></div> <bR> <div> <B>RECOMMENDATION TWO: </B></div> <bR> <div> <B>1. Reduce or eliminate Federal Financial Participation (FFP) to states that continue to maintain large public and private institutions or ICF/MRs. Establish a stringent Medicaid Waiver program to assist states to downsize and close large institutions (16 or more beds.)</B></div> <bR> <div> Best practices in the field of developmental disabilities emphasize people living in their own homes, controlling their own lives and being an integral part of their home community. NConSD believes continued reliance on the Intermediate Care Facilities for People with Mental Retardation Program (ICF/MR), a program by which the HCBS is measured as the WAIVERED optional</div> <bR> <div> <TABLE BORDER="1" CELLPADDING="2" CELLSPACING="1" WIDTH="867" BORDERCOLORLIGHT="#C0C0C0" BORDERCOLORDARK="#808080" FRAME="BELOW" RULES="ROWS" HSPACE="0" VSPACE="0" > <tR> <tD VALIGN=TOP HEIGHT= 81 ><NOBR><div> <IMG SRC="10a923d0.png" border=0 width="146" height="61" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> </NOBR></tD> <tD VALIGN=TOP WIDTH="242"><div> PO Box 1913</div> <div> Pollock Pines, CA 95726</div> <div> (530) 647-8246 (Voice/Fax)</div> <div> email:  TheNConSD@aol.com</div> </tD> <tD VALIGN=TOP WIDTH="423"><div>         <IMG SRC="10d46460.png" border=0 width="70" height="70" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> </tD> </tR> </TABLE></div> <div> Barriers to Community Living</div> <div> Page 2</div> <div> 8/26/2001</div> <bR> <div> benefit, is a barrier to community living. NConSD believes that all institutions should be waivered services. </div> <bR> <div> <B>2. Expedite and publish the new regulations in the Federal Register for public comment and suggestions for changes to the proposal. NOTE: As NConSD advocates for elimination of the ICF/MR program, this is an interim recommendation only. Updated regulations for an outdated program are not a priority.</B></div> <bR> <div> Several years ago, HCFA recognized that the ICF/MR regulations and survey process needed to be updated. New regulations have been developed and are currently being circulated through CMS for review.</div> <div>  </div> <div> <B>3. Expand the "Look Behind Survey" contract and hire additional CMS DD survey specialists</B></div> <bR> <div> Last year, HCFA awarded a 3.5 million dollar ICF/MR Federal Monitoring and Oversight Contract to the Council on Quality and Leadership in Supports for People with Disabilities to conduct "Look Behind Surveys." As media reports continue to expose cover-ups, lax oversight, and questionable state survey practices of public institutions, NConSD believes the contract should be expanded to include other qualified contractors. Also, additional CMS DD specialists should be hired to specialize on ICF/MR surveys. This will help insure their services truly assist people to achieve positive outcomes in rights, dignity, individual choice, control, relationships, community membership, personal goals, achievement, health and safety.</div> <bR> <div> <B>B. Institutionalization of Children</B></div> <bR> <div> <B>RECOMMENDATION THREE:</B></div> <bR> <div> <B>Increase Federal support to states to develop and increase systems that deflect institutionalization of children and work toward every child having the opportunity to grow up in a family. When a child cannot grow up in the natural family, other alternatives should be available, including long-term foster care, shared parenting arrangements, extended respite, and more.</B></div> <bR> <div> NConSD believes all children should have the opportunity to grow up in families. No child should be institutionalized. While many states have adopted policies of not placing children in institutions, very few states have actually stopped the practice. For example, more than 1,200 children reside in institutions in the state of Texas.  While research has proven that children need nurturing family environments to thrive and meet their potential, we continue to deprive children with disabilities this opportunity.</div> <bR> <div> <B>C. Skilled Nursing Facilities</B></div> <bR> <div> <B>RECOMMENDATION FOUR:</B></div> <bR> <div> <B>Support MiCASSA</B></div> <bR> <div> For too long state governments have relied on Skilled Nursing Facilities to deal with their citizens with significant medical needs.  This is the worst possible option for this medically fragile population and is totally unnecessary.  There are NO services provided by a SNF that cannot be provided with higher quality and more economically in the home setting.  This has been proven by the ongoing success of existing HCBS waivers.  All needed medical equipment can be furnished by home Durable Medical Equipment (DME) suppliers.  Respiratory therapists can visit the home as necessary.  Medical needs ranging from mechanical ventilation with oxygen to basic medicine</div> <bR> <div> <TABLE BORDER="1" CELLPADDING="2" CELLSPACING="1" WIDTH="867" BORDERCOLORLIGHT="#C0C0C0" BORDERCOLORDARK="#808080" FRAME="BELOW" RULES="ROWS" HSPACE="0" VSPACE="0" > <tR> <tD VALIGN=TOP HEIGHT= 81 ><NOBR><div> <IMG SRC="10a923d0.png" border=0 width="146" height="61" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> </NOBR></tD> <tD VALIGN=TOP WIDTH="242"><div> PO Box 1913</div> <div> Pollock Pines, CA 95726</div> <div> (530) 647-8246 (Voice/Fax)</div> <div> email:  TheNConSD@aol.com</div> </tD> <tD VALIGN=TOP WIDTH="423"><div>         <IMG SRC="10d46460.png" border=0 width="70" height="70" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> </tD> </tR> </TABLE></div> <div> Barriers to Community Living</div> <div> Page 3</div> <div> 8/26/2001</div> <bR> <div> therapies may be managed and supervised by nurses or personal attendants trained by family or professionals.  One-on-one supervision and care may be provided in the home, whereas in institutions one person may be responsible for twenty or more patients, putting those with substantial needs at risk.  For medically fragile individuals, going unattended for an extended period of time is not only dangerous but possibly fatal.  Thus for many, home care is not only essential for continued freedom of institutionalization, but for their very lives. </div> <bR> <div> <B>RECOMMENDATION FIVE:</B></div> <bR> <div> <B>Increase support for quality assurance and effective monitoring of HCBS programs.</B></div> <bR> <div> <B>1. Issue directives, such as partnering with Department of Education for developing a quality direct care workforce that is able to receive a with a livable wage. </B></div> <bR> <div> Recently a special investigation launched by the House of Representatives revealed incredible abuse in our nation's nursing homes.  For the disability community, this was no surprise.  Members of Congress have suggested more funding for institutions is the answer.  We disagree.  This would be like giving an abusive spouse more money after his abuse had been discovered.  We believe the ultimate and final answer to the continuing abuse problem is to put more resources into removing people from abusive situations.</div> <bR> <div> <B>2. Initiate "Look Behind Survey" contracts similar to the ICF/MR Federal Monitoring and Oversight Contract with disabilities specialists</B> <B>in the field of surveying quality community services and hire additional CMS DD survey specialists grounded in the philosophy of HCBS. </B></div> <bR> <div> CMS does not have capacity to ensure states are effectively implementing, monitoring, and assuring quality in HCBS programs. In 1997, bowing to political pressure and media coverage, CMS capped new admissions to California's HCBS DD waiver program after visiting only 91 out of 38,000 participants. More recently, CMS placed a moratorium on moving any more residents out of Tennessee's state-run developmental centers after finding glaring deficiencies in that state's waiver program. Clearly, state HCBS waiver programs should not reach a crisis before CMS becomes aware of the problems. Monitoring and oversight should be sufficient to insure that services truly assist people to achieve positive outcomes in rights, dignity, individual choice, control, relationships, community membership, personal goals, achievement, health and safety.</div> <bR> <div> <B>3. Direct access and input to quality assurance system should be available to individuals, their families and support network.</B></div> <bR> <div> Quality Assurance that guarantees abuse prevention must be addressed systematically. Essential components of the Quality Assurance design must include ease and effectiveness of implementation, and utilize the resources presently at hand in the fields of technology and communication.  Measures that include the ability to easily and quickly report abuse, as well as an immediate response plan, must be in place. Just as there are now measures in place nationally to note, register, and track abusers in general, especially for children, so too should there be in place a mechanism to protect our most vulnerable citizens as they gain and sustain their reentry into the community.</div> <bR> <div> <B>III. Community Living</B></div> <bR> <div> <B>A. Changes for HCBS</B></div> <bR> <div> <B>RECOMMENDATION SIX:</B></div> <bR> <div> <TABLE BORDER="1" CELLPADDING="2" CELLSPACING="1" WIDTH="867" BORDERCOLORLIGHT="#C0C0C0" BORDERCOLORDARK="#808080" FRAME="BELOW" RULES="ROWS" HSPACE="0" VSPACE="0" > <tR> <tD VALIGN=TOP HEIGHT= 81 ><NOBR><div> <IMG SRC="10a923d0.png" border=0 width="146" height="61" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> </NOBR></tD> <tD VALIGN=TOP WIDTH="242"><div> PO Box 1913</div> <div> Pollock Pines, CA 95726</div> <div> (530) 647-8246 (Voice/Fax)</div> <div> email:  TheNConSD@aol.com</div> </tD> <tD VALIGN=TOP WIDTH="423"><div>         <IMG SRC="10d46460.png" border=0 width="70" height="70" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> </tD> </tR> </TABLE></div> <div> Barriers to Community Living</div> <div> Page 4</div> <div> 8/26/2001</div> <bR> <div> <B>Make HCBS mandatory and institutions the waivered service.  Increase FFP so that states will have incentives to make HCBS the rule, not the exception. </B></div> <bR> <div> Currently the federal government does not mandate Home and Community-Based Services.  It is just an 'option' states can take or leave, fund or cut at a whim or according to their fiscal situation. However, states have no problem stripping citizens of their freedom and segregating them in far-away institutions because this is a required service.  This is absurd and must be changed.  A citizen's liberties should never be subject to the whims of bureaucrats, budgetary fluctuations or arbitrary age limits.  The civil right to live, work, play in the community among family and friends regardless of color, religion or disability, should not be "optional" for states.  In this free country no citizens, regardless of the severity or type of their disability, should be denied freedom just because states do not have the resources or political willpower to adequately fund or set up HCBS programs.  Elimination of barriers to community living isn't just important for Americans with disabilities' health care needs, but for their civil rights as well.</div> <bR> <div> <B>B. Direct Care Wages</B></div> <bR> <div> <B>RECOMMENDATION SEVEN:</B></div> <bR> <div> <B>Department of Health and Human Services make a special effort to fully investigate the wage and rate crisis by hosting a special hearing, teleconference, or specifically ask for comments regarding THIS barrier to community living. The New Freedom Initiative will never be successful until this barrier is removed and the crisis resolved.</B></div> <bR> <div> Throughout the country, a most urgent national crisis, and perhaps the biggest barrier to community living are the wages allowed by state and federal law for direct care workers and the rates for programs for thousands of people with disabilities and long term care needs in every community. Direct care workers are paid desperately low wages. Programs and other community services cannot continue to survive without increasing rates that will cover costs.</div> <bR> <div> Home and Community Based Services need to have the resources so direct care staff can receive a decent livable wage and receive the training necessary that assures quality care based on a foundation of best practices. It is hoped that by offering a livable wage and job training much of the abuse inflicted upon people with disabilities can be eliminated. Assistance from others often is necessary for individuals with significant disabilities of all ages to participate in and contribute to society. As a result of the absence of a national policy that ensures a living wage for those who provide assistance to individuals with disabilities, many attendants receive poverty-level wages; no benefits; little recognition for the difficulty and immense importance of the work they do; and minimal career training, advancement opportunities or pay raises. </div> <bR> <div> Those who provide the assistance that make the lives and futures of people with disabilities possible must be assured a living wage, decent employment benefits, and current and best practice training. With training and a livable wage the pool of potential and qualified attendants from which to choose will increase; greater quality assurance will be had; and the likelihood of abuse will diminish.</div> <bR> <div> <B>C. Coordination of services</B></div> <bR> <div> <B>RECOMMENDATION EIGHT:</B></div> <bR> <div> <B>Federal initiatives that would support coordination could include a registry/data base of current research, support for telemedicine so people could have access to experts in various fields, waivers that would include case management across disability, and information in different formats.</B></div> <bR> <div> <TABLE BORDER="1" CELLPADDING="2" CELLSPACING="1" WIDTH="867" BORDERCOLORLIGHT="#C0C0C0" BORDERCOLORDARK="#808080" FRAME="BELOW" RULES="ROWS" HSPACE="0" VSPACE="0" > <tR> <tD VALIGN=TOP HEIGHT= 81 ><NOBR><div> <IMG SRC="10a923d0.png" border=0 width="146" height="61" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> </NOBR></tD> <tD VALIGN=TOP WIDTH="242"><div> PO Box 1913</div> <div> Pollock Pines, CA 95726</div> <div> (530) 647-8246 (Voice/Fax)</div> <div> email:  TheNConSD@aol.com</div> </tD> <tD VALIGN=TOP WIDTH="423"><div>         <IMG SRC="10d46460.png" border=0 width="70" height="70" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> </tD> </tR> </TABLE></div> <div> Barriers to Community Living</div> <div> Page 5</div> <div> 8/26/2001</div> <bR> <div> Inadequate coordination of services and not taking advantage of latest technology are barriers to community living.  Please take a look at Mapping the Mess <U>http://www.stanford.edu/~rhorn/alamedamap.html</U> </div> <div> Many people with significant disabilities have complex needs which often are met through a myriad of agencies. People who live in rural areas have difficulty in obtaining specialized services. People with rare diagnoses often aren't aware of the latest research and </div> <div> innovations. Information is difficult to come by and to understand. </div> <bR> <div> <B>IV. Civil Rights Efforts that Support Community Living</B></div> <bR> <div> <B>RECOMMENDATION NINE:</B></div> <bR> <div> <B>Support increased funding for Protection & Advocacy (PAI) and Office of Civil Rights (OCR) Programs.</B></div> <bR> <div> NConSD believes it is a barrier to community living when Protection & Advocacy programs and the Department of Health and Human Services (DHHS) Office for Civil Rights (OCR) are not adequately funded to fulfill their missions.</div> <bR> <div> <B>a. Protection & Advocacy (P&A) programs</B> are among the primary federal enforcers of civil rights laws protecting an individual's right to live, play, work and go to school in the most integrated settings appropriate to meet their needs.  With limited federal funds, (P&A) programs have represented thousands of children and adults with disabilities through individual advocacy and systemic class action lawsuits. P&As seek enforcement of Americans with Disabilities Act, fair housing, education, foster care, and Medicaid laws that require appropriate community based services and supports for people with disabilities.</div> <bR> <div> In the past two years alone, dozens of cases have been filed claiming that the state is failing to provide appropriate community-based services to children, teenagers and adults who are, can, and want to live in their hometowns and neighborhoods. Instead, they remain in Intermediate Care Facilities for People with Mental Retardation (ICF/MR) programs, in nursing homes, state hospitals and psychiatric facilities, and on multi-year waiting lists.  P&A representation has led to people with severe and profound disabilities being supported in community living arrangements, which major scientific studies show often results in individuals having better lives and greater self-sufficiency than if they remained institutionalized.</div> <bR> <div> <B>b. The Department of Health and Human Services (DHHS), through the Office for Civil Rights (OCR)</B>, promotes and ensures that people have equal access to and opportunity to participate in and receive services in all HHS programs without facing unlawful discrimination. </div> <bR> <div> Key goals of the DHHS OCR include empowering individuals with disabilities and strengthening families. The program increase requested in the 2002 Budget would be used to support the Administration's critical New Freedom initiative that focuses on increasing the integration of persons with disabilities into their communities and the world of work.</div> <bR> <div> Several forces have come together during the first years of the 21st century to increase the visibility of several key civil rights issues that have been the focus of OCR outreach, technical assistance, public education and compliance activities during the past two to three years. These include federal and state responses to the Supreme Court's June 1999 decision in the Olmstead most-integrated setting case, which many observers have called the Brown v. Board of Education of the disability rights movement.</div> <bR> <div> <B>V. Housing</B></div> <bR> <div> <TABLE BORDER="1" CELLPADDING="2" CELLSPACING="1" WIDTH="867" BORDERCOLORLIGHT="#C0C0C0" BORDERCOLORDARK="#808080" FRAME="BELOW" RULES="ROWS" HSPACE="0" VSPACE="0" > <tR> <tD VALIGN=TOP HEIGHT= 81 ><NOBR><div> <IMG SRC="10a923d0.png" border=0 width="146" height="61" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> </NOBR></tD> <tD VALIGN=TOP WIDTH="242"><div> PO Box 1913</div> <div> Pollock Pines, CA 95726</div> <div> (530) 647-8246 (Voice/Fax)</div> <div> email:  TheNConSD@aol.com</div> </tD> <tD VALIGN=TOP WIDTH="423"><div>         <IMG SRC="10d46460.png" border=0 width="70" height="70" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> </tD> </tR> </TABLE></div> <div> Barriers to Community Living</div> <div> Page 6</div> <div> 8/26/2001</div> <bR> <div> <B>RECOMMENDATION TEN:</B></div> <bR> <div> <B>1. Continue and increase funding for housing vouchers.</B></div> <bR> <div> <B>2. Add more enforcement capabilities to the Fair Housing Amendments including education of rights.</B></div> <bR> <div> <B>3. Expand, strengthen and make more available home ownership initiatives. Require individuals be informed of that option.</B></div> <bR> <div> <B>4. Have transition funding for necessary first time expenses to gain access to housing.</B></div> <bR> <div> <B>5. Allow person to receive supplemental resources in way of disregards to SSI so people can gain addition funding from either their job or from the private sector making owning a home a viable option.</B></div> <bR> <div> <B>6. Increase the ability for an individual to save more than 2000 dollars a year or have a person development account where one can use that to either save for a down payment or repairs.</B></div> <bR> <div> Lack of accessible affordable housing is a major road block to community living.  Housing availability must be concurrent with availability of personal services.  Incentives for home ownership must be a viable option.</div> <bR> <div> <B>VI. Employment</B></div> <bR> <div> <B>RECOMMENDATION ELEVEN:</B></div> <bR> <div> <B>1. Federal Funding for segregated employment must be shifted to community employment which includes self-employment and development of one's own business or micro-enterprise.</B></div> <bR> <div> <B>2. Make 1902 (r) (2) a provision not just an option so individuals can gradually work towards independence without totally losing health benefits.</B></div> <bR> <div> <B>3. Increase the disregard SSI on earned income to reflect inflation. Increase the 65 dollar limit per month to 260 dollars with a provision for yearly increases to keep up with inflation and to afford people a way to gain self-sufficiency and save for things like housing and transportation to work.</B></div> <bR> <div> The current structure of benefits through SSI ensnares people to remain in poverty with no viable way out.  Employment for individuals with disabilities must be attainable.  The transition from school to work or welfare to work should have a real and meaningful outcome for people with disabilities.</div> <bR> <div> <B>VII. Access to Accurate Information</B></div> <bR> <div> <B>RECOMMENDATION TWELVE:</B></div> <bR> <div> <B>1. Issue policy guidelines, clarifications, and provide on-going technical support in order to fully understand services that are available under the Medicaid "Rehabilitation" option and make it available to the public.</B></div> <bR> <div> <TABLE BORDER="1" CELLPADDING="2" CELLSPACING="1" WIDTH="867" BORDERCOLORLIGHT="#C0C0C0" BORDERCOLORDARK="#808080" FRAME="BELOW" RULES="ROWS" HSPACE="0" VSPACE="0" > <tR> <tD VALIGN=TOP HEIGHT= 81 ><NOBR><div> <IMG SRC="10a923d0.png" border=0 width="146" height="61" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> </NOBR></tD> <tD VALIGN=TOP WIDTH="242"><div> PO Box 1913</div> <div> Pollock Pines, CA 95726</div> <div> (530) 647-8246 (Voice/Fax)</div> <div> email:  TheNConSD@aol.com</div> </tD> <tD VALIGN=TOP WIDTH="423"><div>         <IMG SRC="10d46460.png" border=0 width="70" height="70" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> </tD> </tR> </TABLE></div> <div> Barriers to Community Living</div> <div> Page 7</div> <div> 8/26/2001</div> <bR> <div> <B>2. Prior to receiving services, ensure the individual and/or designated representative is fully informed of their rights and have knowledge of the full array of services available to them.  Using an accounting method like that of a check off box signed by individual and/or designated representative should be used to make informed choice a reality.</B></div> <bR> <div> <B>3. Provide for outreach, public education and marketing strategy for awareness and understanding of long term care.</B></div> <bR> <div> Missing is an ability for consumers and agencies to get equal access to accurate and consistent information that is needed to make informed choices.  More must be done to have a clear understanding of what is available so people can utilize what is there.  Service coordinators and case managers who are working for the agencies which provide the funding may not always share information that is available.  People need an easy to use and easy to understand, digestible format in order to gain control over their lives.</div> <bR> <div> <B>VIII. Coordination Among Departments/Agencies</B></div> <bR> <div> <B>RECOMMENDATION THIRTEEN:</B></div> <bR> <div> <B>Create a Coordinating Body consisting of various representation from Departments such as HHS, HUD, SSA, DOE, DOT, IRS, OSERS, OSEP or any others who are affected by changes in rules or policies.</B></div> <bR> <div> A lack of coordination between and among the various agencies and departments can lead to conflicting or ineffective situations like the lack of housing vouchers from HUD concerning the nursing home transition grants through HHS. Misunderstanding or lack of understanding of the impact of one rule change on other departments or agencies is a source of conflict and problems.  It creates grid lock.  Having a coordinating body could upfront address conflicts and create an environment that is more synergetic than currently exists.</div> <bR> <div> Our hopes are that you carefully consider the barriers we have identified to community living for people with disabilities. Thank you again for soliciting comments on "Removing Federal Barriers to Community Living".</div> <bR> <div> Sincerely,</div> <bR> <div> Bill Coffelt, Co-Chair (Parent Representative)</div> <div> Ray Gerke, Co-Chair (Self-Advocate)</div> <div> Robert Sneirson, Vice Co-Chair (Self-Advocate)</div> <div> Meg Kane, Vice Co-Chair (Parent Representative)</div> <bR> </tD> </tR> </TABLE></B></div> <div> <B>  <script type="text/javascript" language="JavaScript"> sw="none";sd="none";ref=""+escape(document.referrer); </script> <script type="text/javascript" language="JavaScript1.2"> sw=screen.width;nav=navigator.appName; sc=(nav!="Netscape")?screen.colorDepth:screen.pixelDepth; </script> <script type="text/javascript" language="JavaScript"> function doit(str) {document.writeln(str);} qs="&sw="+sw+"&sc="+sc+"&ref="+ref; url='http://counter45.bravenet.com/index.php?'; url += 'id=346566&usernum=3816206365&cpv=1'; curl='http://counter45.bravenet.com/counter.php?id=346566&usernum=3816206365'; doit('<a href="'+url+'" target="_top"><img border="0" src="'+curl+qs+'" /></a>') </script> <noscript> <a href="http://counter45.bravenet.com/index.php?id=346566&usernum=3816206365&cpv=1" target="_top"><img src="http://counter45.bravenet.com/counter.php?id=346566&usernum=3816206365" alt="Bravenet.com" border="0" /></a> </noscript>  </B></div> </td> </tr></table></body>