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Advocacy

Hot Topics -Oct 2011

Fair Wages for People with Disabilities Legislation Introduced

On October 4, 2011, The Fair Wages for People with Disabilities Act, H. R. 3086 was introduced by Congressmen Tim Bishop (R.NY) and Cliff Stearns (R.FL).  The purpose of this bill is to phase out special wage certificates under the Fair Labor Standards Act of 1938 under which individuals with disabilities may be employed at subminimum wage rates.

This new law phases out special wage certificates held on the date of enactment of this Act as follows:

(A)     by private for profit entities shall be revoked 1 year after such date of enactment;

(B)      by public or governmental entities shall be revoked 2 years after such date of enactment; and,

(C)      by non-profit entities shall be revoked 3 years after such date of enactment.

NDSC’s employment statement, reads, on the issue of competitive wages: 

Equal pay for equal work in competitive work settings.

Competitive Employment. Inclusive employment must be accompanied bycompetitive wages.  Individuals with disabilities should have access to the same wages and benefits as their co-workers, not singled out for a separate system of pay.

__________________________________________________

No Child Left Behind Bill Released

Senator Tom Harkin (D.IA),  Chairman of the Senate Health, Education, Labor and Pensions (HELP) Committee has released language for reauthorization of the Elementary and Secondary Education Act (ESEA), formerly known as No Child Left Behind.  Mark-up of the bill is scheduled for next week, October 18th.

NDSC continues to advocate for access to the general curriculum, strict accountability for teachers and school districts and inclusion in all aspects of the general classroom.  The full language, including a redline markup, can be found on the HELP website in the lower right hand corner:  http://help.senate.gov/hearings/hearing/?id=b4d24a56-5056-9502-5d73-a45a120b096b.

 


July 2011

For Legislation Updates go to www.cdcan.us

State Budget Crisis :

Department of Social Services Releases Draft "All County Letter" and Other Information Regarding Implementation of AB 1612 "General Exception Process" for IHSS Workers & Applicants Who Might Otherwise Be Disqualified Due To Certain Criminal Convictions

Legislation Was Part of 2010-2011 State Budget Passed Four Months Late in October 2010 That Added New Crimes That Disqualify a Person From Working As An IHSS Provider - AB 1612 Also Allowed For "General Exceptions"

SACRAMENTO, CALIF (CDCAN)  [Last updated 07/12/2011 03:45 PM] -  The Department of Social Services, the state agency that oversees statewide the In-Home Supportive Services (IHSS) program, released today draft versions of information that counties and other agencies will use - when finalized - in implementing under AB 1612, the "general exception" process for certain crimes committed by persons that would otherwise be disqualified to work as an IHSS provider. 

Copies of those draft documents are attached to this CDCAN Report, and information regarding the legislation from 2009, 2010 and this year that either are addressed in those documents (or will impact the process outlined in those documents) are listed below. 

AB 1612 was passed and enacted into law as part of the 2010-2011 in October 2010, added additional crimes that would disqualify a person from working as an IHSS worker (provider) in addition to those crimes listed in ABx4 19, passed and enacted in July 2009 as part of the revised 2009-2010 State Budget. 

An IHSS recipient can sign a waiver form that would allow that otherwise disqualified person (under ABx4 19 and AB 1612) to work or continue to work, though the waiver only applies working for that specific individual. [CDCAN Note: the "x4" refers to the 4th special or extraordinary session of the Legislature that year]  

A related bill, AB 876 by Assemblymember Valado (Republican - Hanford), was signed into law last week by Governor Brown dealing with prohibiting an IHSS worker or person applying to be a worker from signing the waiver form as the IHSS recipient's authorized representative. 

Implementation of New Requirements Impacts Thousands of IHSS Recipients and Workers 

*  The implementation of the new requirements have impact on tens of thousands of people who wish to work or are currently working as an IHSS provider - and tens of thousands of people with disabilities, mental health needs, seniors and the blind who are recipients of IHSS. 

*  The implementation also impacts counties, the Department of Social Services, regional centers, regional center funded community-based organizations such as supported living services agencies who provide support staff who work also as IHSS workers to thousands of people with developmental disabilities, and various advocacy groups throughout the State. 

Background of AB 1612 Requirements for IHSS Workers Regarding Crimes

* The draft  All County Letter" (ACL) provides counties with information regarding the implementation of sections of AB 1612 (Chapter 725, Statutes of 2010) that was signed into law on October 19, 2010  by then Governor Arnold Schwarzenegger as part of the 2010-2011 State Budget

* ABx4 19 (Chapter 17, Statutes of 2009), that was signed into law by Governor Schwarzenegger on July 28, 2009 as part of the revised 2009-2010 State Budget, amended or added sections 12301.6 and 12305.86 to the California Welfare and Institutions Code (W&IC) establishing new requirements for prospective IHSS workers (providers).
* The expanded requirements included a provision that each applicant  must submit fingerprints and undergo and pass a criminal background check conducted by the California Department of Justice (DOJ).
* Prior to the passage of AB 1612 in October 2010, the only crimes for which a potential IHSS provider could be disqualified from providing services to an IHSS recipient were those specified in Welfare and Institutions Code Section 12305.81, also known as "Tier 1 crimes":  Child abuse (as specified under California Penal Code Section 273a(a)); Elder or Dependent Adult abuse (as specified under Penal Code Section 368); and  Fraud against a government health care or supportive services program.
*  AB 1612 added new provisions to California law which require that an individual, in order to pass the criminal background check, must not have been convicted of, or incarcerated following a conviction for, certain felony crimes as specified in Welfare and Institutions Code Section 12305.87. These crimes, also known as "Tier 2 crimes", fall into six broad categories: 
- Sex crimes for which a person is required to register as a sex offender under California Penal Code Section 290(c);
- Physical crimes against a person;
- Crimes against property;
- Fraud and money crimes;
- Non-physical crimes against a person;
- Serious felonies not against a person or property.
*  An individual who, within the last ten years, has been convicted of, or incarcerated following a conviction for, one of the above crimes is ineligible to be enrolled as an IHSS provider without the granting of an individual waiver or general exception.
*  Upon determining that an applicant provider is ineligible to serve as an IHSS provider based on a "Tier 2" criminal conviction, the county/Public Authority (PA)/Non-Profit Consortium (NPC) shall inform the applicant provider of this determination and the reason for his or her ineligibility. The applicant provider will also be informed of his or her ability to file an appeal of this determination of ineligibility.
*  The applicant provider's chosen IHSS recipient will also receive a notice from the county/PA/NPC informing him or her of the applicant provider's ineligibility due to conviction for a "Tier 2" crime.
*  The IHSS recipient will also be informed of his or her ability to file an individual waiver on behalf of the applicant provider to allow that individual to work as an IHSS provider for him or her only, regardless of the "Tier 2" criminal conviction.
*  The draft instructions from the Department of Social Services indicates that  if an applicant provider wishes to provide services for multiple recipients or wishes to be placed on a provider registry and has been determined ineligible due to a "Tier 2" criminal conviction, he or she is also informed that he or she may file for a general exception of the exclusion.
*  The draft "All County Letter"  will provide a breakdown of the steps necessary for an applicant provider to apply for a general exception.

Interested Persons and Organizations Can Review &Comments on Draft Information by July 26th 

The Department of Social Services is requesting that interested persons or organizations review the draft comments, and submit any comments, concerns or suggestions regarding the drafts by July 26, 2011 (Tuesday) (they are asking that if several persons or organizations within can, if possible, combine their comments into one document to help speed up review)

WHAT: Draft Information Documents to Counties from Department of Social Services Regarding Implementation of General Exception Process of Exclusionary for IHSS Workers (Providers) Under AB 1612

DEADLINE TO SUBMIT ANY COMMENTS:  July 26, 2011, Tuesday

SEND COMMENTS TO: 

*  Don Tresca at Don.Tresca@dss.ca.gov and

*  Carey Yamanaka at Carey.Yamanaka@dss.ca.gov

FOR MORE INFORMATION CONTACT:

Charissa S. Miguelino, Chief - Adult Programs Policy and Operations Bureau

California Department of Social Services

Email: Charissa.Miguelino@dss.ca.gov

The following documents are attached to this CDCAN Report that can be viewed and downloaded:

1.  DRAFT ALL COUNTY LETTER (ACL): provides guidelines and procedures from the State to the counties and various county agencies regarding the review of general exceptions for exclusionary crimes for IHSS workers (providers). The State - primarily the Departments of Health Care Services and the Department of Social Services - issues on a regular basis "All County Letters" or "All County Notices" to the counties providing instructions, guidelines or information regarding certain statewide program changes, such as IHSS, Medi-Cal, SSI/SSP, foster care and adoption assistance, CalWORKS.  The 6 page pdf file attached to this report was saved as a document, so persons who are blind or sight impaired should be able to read it  using a screen reading device. The title of the document attached is:  "20110712-DRAFT-ACL-General Exception Requests rev 6-7-11.pdf"

2. DRAFT FLOW CHART FOR GENERAL EXCEPTIONS PROCESS:  a 2 page flow chart (draft) that outlines the general exception process.  The 2 page pdf file attached to this report was saved as a document, so persons who are blind or sight impaired should be able to read it  using a screen reading device. The title of the document attached is:  "20110712-DRAFT-GeneralException process flow chart rev 6-8-11.pdf"

3. DRAFT IHSS GENERAL EXCEPTION PROCESS MANUAL:  draft manual with more detailed instructions on the general exception process.  The53 page pdf file attached to this report was saved as a document, so persons who are blind or sight impaired should be able to read it  using a screen reading device. The title of the document attached is:  "20110712-DRAFT-General Exception Manual rev. 7-11-11.pdf:"

INFORMATION REGARDING LEGISLATION

For reference, information on three bills - one from 2009 (ABx4 19), one from 2010 (AB 1612) and one from 2011 (AB 876) that are either directly referenced in the draft "All County Letter" and other draft documents released today (July 12) by the Department of Social Services addresses or in the case of AB 876, impacts the process outlined in those documents. 

AB 1612 - 2010-2011 BUDGET TRAILER BILL: HUMAN SERVICES

AUTHOR: Assembly Budget Committee

CDCAN SUMMARY:

This is the 2010-2011 Human Services budget trailer bill that contain changes in law impacting several human services programs including IHSS, CalWORKS, and Welfare Services and Foster Care.

PREVIOUS ACTION 10/08/2010: PASSED Assembly by vote of 54 to 17.  (PASSED State Senate by vote of 27 to 8 on 10/07/2010)

LATEST ACTION 10/19/2010:  SIGNED by the Governor.  CHAPTERED by the Secretary of State (Chapter 725, Statutes of 2010)

EFFECTIVE DATE: Bill goes into effect immediately, though certainly provisions take effect later as implemented by the appropriate department.

CDCAN COMMENT:  Among other things, this bill adds additional crimes on top of what was required in ABx4 19 in 2009, that would disqualify a person from working as an IHSS worker (provider).  The bill, as chaptered and signed into law, is 73 pages long. 

LATEST VERSION OF BILL - HTML: http://www.leginfo.ca.gov/pub/09-10/bill/asm/ab_1601-1650/ab_1612_bill_20101019_chaptered.html

LATEST VERSION OF BILL - PDF: http://www.leginfo.ca.gov/pub/09-10/bill/asm/ab_1601-1650/ab_1612_bill_20101019_chaptered.pdf

PRIORITY: VERY HIGH 

ABx4 19 -2009-2010 BUDGET TRAILER BILL: IN-HOME SUPPORTIVE SERVICES

AUTHOR: Assemblymember Noreen Evans (Democrat - Santa Rosa)

CDCAN SUMMARY:

Thehuman services budget trailer bill dealing specifically with the In-Home Supportive Services (IHSS) program making necessary changes to existing State law in order to implement the 2009-2010 State Budget as revised in July 2009.  Provisions included adding certain crimes ("Tier 1") that would disqualify a person from working as an IHSS worker (provider). 
PREVIOUS ACTION 07/24/2009: PASSED State Senate by vote of 25 to 15.  PASSED by Assembly by vote of 42 to 33.  

LATEST ACTION 07/28/2009: SIGNED by the Governor. CHAPTERED by the Secretary of State (Chapter 17, Statutes of 2009-2010 Fourth Extraordinary Session).

EFFECTIVE DATE:January 1, 2010 (or as provided for in the bill after that date)

CDCAN COMMENT: The enacted version of the bill is 18 pages.  AB 1612, passed a year later as part of the 2010-2011 State Budget in October 2010 (four months late), added additional crimes on top of what ABx4 19 required.   

LATEST VERSION OF BILL - HTML: http://www.leginfo.ca.gov/pub/09-10/bill/asm/ab_0001-0050/abx4_19_bill_20090728_chaptered.html

LATEST VERSION OF BILL - PDF: http://www.leginfo.ca.gov/pub/09-10/bill/asm/ab_1601-1650/ab_1612_bill_20101019_chaptered.pdf

PRIORITY: VERY HIGH

AB 876 - IN-HOME SUPPORTIVE SERVICES

AUTHOR: Assemblymember David Valadao (Republican - Hanford, 30th Assembly District)

CDCAN SUMMARY:

Would narrow the circumstances that allow a In-Home Supportive Services (IHSS) provider (worker) of to sign, on the IHSS recipient's behalf,the form that allows the IHSS recipient to hire a IHSS provider with a criminal record that includes various felonies.

PREVIOUS STATUS 07/07/2011: SIGNED by the Governor.

LATEST STATUS 07/08/2011: CHAPTERED by the Secretary of State, Chapter 73, Statutes of 2011. ("Chaptered" means the bill, as signed by the Governor, has been officially filed and part of State law)

EFFECTIVE DATE: Provisions of bill take effect January 1, 2012.

CDCAN COMMENT:  This bill, while very important in terms of correcting an "unintended consequence", was not controversial and was supported without opposition in both the Assembly and State Senate.   

LATEST VERSION OF BILL - HTML:  http://www.leginfo.ca.gov/pub/11-12/bill/asm/ab_0851-0900/ab_876_bill_20110624_enrolled.html

LATEST VERSION OF BILL - PDF:  http://www.leginfo.ca.gov/pub/11-12/bill/asm/ab_0851-0900/ab_876_bill_20110624_enrolled.pdf

PRIORITY: VERY HIGH

July 2010

Action Alert

HELP US PASS THE ABLE ACT IN THIS CONGRESS!
Contact Your Representatives to Convene a Hearing and Vote on the ABLE Act Today

As you know, the National Down Syndrome Society endorsed the Achieving a Better Life Experience Act (ABLE) of 2009 (S. 493/H.R. 1205).  The ABLE Act will give individuals with disabilities and their families the ability to save for their child's future just like every other American family, and help people with disabilities live full, productive lives in their communities.  The ABLE Act will allow individuals with disabilities to create a disability savings accounts or 'ABLE Accounts' that would accrue interest tax-free.  The account could fund a variety of essential expenses for the individual, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation.  

The legislation continues to have widespread, bipartisan support.  Currently, H.R. 1205 has 180 cosponsors, including 19 members of the House Ways & Means Committee.

The time to pass this bill is now- Please contact your Representatives to encourage them to convene a hearing and vote on the ABLE Act today!

We've included (below) a script to help you reach out to your Representative.

Script/Talking Points to Call Your Representative

ADVOCATE:

Hi, my name is __________. I'm a constituent from ____ (home town)____. Could I please speak to the Congressman's Legislative Assistant who handles disability issues?

CONGRESSIONAL OFFICE:

Let me see if XXXX is available. May I ask what you are calling about?

ADVOCATE:

Sure, I'm an advocate for _____________. I would like to discuss what a piece of legislation that is very important to our family.

CONGRESSIONAL OFFICE DISABILITY LEGISLATIVE ASSISTANT:

Hi, this is XXXX, how can I help you?

ADVOCATE:

Hi, this is ___ (your name) __ from ___(home town) ____. I'm an individual/parent of a child/adult with Down syndrome. I would like to discuss a piece of legislation that is very important to our family. I am calling to ask Representative ____________ to help pass the Achieving a Better Life Experience Act (ABLE) of 2009 (S 493/HR 1205) this year.  Specifically, we need you to:

  • 1) Draft a letter to Chairman Levin to convene a hearing on the bill; and
  • 2) Encourage House leadership to schedule a vote on the bill this Congress.

The legislation is being led by the following Members:

  • Representatives Crenshaw (R-FL), Meek (D-FL), Kennedy (D-RI), McMorris Rodgers (R-WA), and McDermott (D-WA)

The bill has 180 cosponsors, including 19 members of the House Ways & Means Committee, in the House. 

The legislation encourages persons with disabilities to save in order to live an independent and meaningful life while reducing their dependency on public benefits while not jeopardizing benefits.

This legislation allows for the establishment of tax-exempt financial security accounts for individuals with disabilities to pay certain expenses, including: medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation.

CONGRESSIONAL OFFICE DISABILITY LEGISLATIVE ASSISTANT:

I will let my boss know that we talked and make sure to discuss this request with him/her.

ADVOCATE:

If your boss has any questions or is interested in cosponsor the bill, you may contact:

Dustin Krasny (202-225-2501) in Representative Ander Crenshaw's office

 

 


ALERT! No Restraint/Seclusion in IEP
Protect IDEA Rights!

 

 

(S.2860 and HR 4247)

As reported in a NDSC Call for Action last month, on Wednesday, December 9, 2009, Congressman George Miller (D-CA) and Congresswoman Cathy McMorris-Rodgers (R-WA) (parent of 2 year old Cole, who has Down syndrome), introduced legislation that would protect all children in schools from harmful restraint and seclusion practices. Senator Chris Dodd (D-CN) has introduced similar legislation in the Senate. This bill would apply to public schools, private schools and preschools receiving federal education support.

NDSC has received reports from parents of children with Down syndrome as young as 4 years old about instances where their child was subjected to abusive techniques. For example, a parent paid a surprise visit to their child's preschool and found that their son was tied to a chair.

Our awareness of widespread practices such as the one mentioned above led NDSC and other national disability organizations to begin the APRAIS coalition in 2004. APRAIS is dedicated to the elimination of restraint, seclusion and abuse of students with disabilities in schools. The efforts of the APRAIS coalition over the past several years led to the introduction of this bill.

In a thank-you letter from the APRAIS coalition to Congresswoman McMorris-Rogers, it is stated:

Restraint or seclusion in education is often unregulated and reportedly all too common for behaviors that do not pose danger or threat of harm. A recent Texas Tribune review of state data shows public school educators used physical restraints roughly 100 times a day during the 2007-08 school year, with school staff restraining four of every 100 special education students for a total of 18,000 times, and some students being restrained dozens of times.

It is important for parents to be aware that these practices occur. The Council of State School Administrators (CASE), in a critique of the bill states that potential use of physical interventions should be included in a student's plan. NDSC strongly disagrees with this statement! If you would like a copy of a "no restraint" letter to send to schools, please contact susan@ndsccenter.org.

Some suggestions for parents who are concerned about these practices include:

1. The IEP should NEVER contain any sanction of seclusion and restraint. Parents should never accept restraint or seclusion on a child's Individualized Education Program (IEP) or in any other context.

The purpose of the IEP meeting to establish appropriate programming and positive behavior supports designed to avoid severe behavior problems. The IEP should NOT sanction restraint and seclusion practices.

2. If an IEP includes provisions for restraint or seclusion, they should be removed immediately. The proposed legislation explicitly prohibits inclusion of these practices in an IEP.

3. The purpose of the IEP meeting to establish appropriate programming and positive behavior supports designed to avoid severe behavior problems.

4. Keep a keen eye for signs of disciplinary measures gone wrong, especially if you're dealing with a child who can't tell you what's going on at school. Pay attention if a child is nervous about school, refuses to go or is acting out in any way.

5. If you suspect trouble, know your rights. The protection and advocacy system, or P&A, in almost every state offers a brochure or manual on restraint and seclusion rules, Find out the contact information for your state P&A agency at www.ndrn.org.

You can read the House or Representatives and Senate version of this Act at http://thomas.loc.gov. Key in either S.2860 or HR 424. Other resources include:

http://aprais.tash.org/

http://www.gao.gov/new.items/d09719t.pdf

http://www.copaa.org/pdf/UnsafeCOPAAMay_27_2009.pdf...

http://www.napas.org/sr/SR-Report.pdf

http://www.disabilityscoop.com/2010/01/19/restraint-seclu...

An example of some of the stories that are being reported nationally can be found at:

http://www.11alive.com/rss/rss_story.aspx?storyid=140131&...


July 2009                                                      

   For Legislation Updates go to www.cdcan.us 

2009 CHANGES TO THE LANTERMAN ACT & CUTS IN SERVICES EARLY START SERVICES 

411 North Central Avenue,  Suite 620;  Glendale, CA 91203-2020

Voice: 818/543-4631  Fax: 818/543-4635  Website www.areaboard10.org 

DEVELOPMENTAL DISABILITIES AREA BOARD 10 

Protecting and Advocating for Persons with Developmental Disabilities in Los Angeles County 

Eligibility for Early Start services will be restricted.

• Infants and toddlers who are at “high risk” of having a substantial developmental disability (prematurity, other biomedical and/or social factors) will no longer be eligible for Early Start services. They will be eligible for a new state-funded prevention program which is limited to offering case management, information and referral to other generic agencies.

Appeal Strategies: No basis for appeal unless child can qualify in another category, e.g., has an “established risk condition”.

• In order to qualify as a child with a developmental delay, the delay must be at least 33% in one developmental area for children under 24 months and 50% in one developmental area or 33% in two areas for children over 24 months.

Appeal Strategies: Ensure thorough and accurate assessments to document nature of delays.

• Regional centers will no longer fund services that are not required by the federal government. These include day care, respite, other family support services and most medical services, except for durable medical equipment.

Appeal Strategies: None under Early Start Program.  Can access these services if child is qualified as eligible for services under state Lanterman Act.

• Regional centers will give priority to funding integrated neighborhood preschools rather than specialized infant development programs established for children with special needs.

Appeal Strategies: Must be able to document that child’s needs can only be met by utilizing an infant development program.

NON-MEDICAL SERVICES AND THERAPIES 

Access to In-Home Behavioral Intervention services will be limited.

• Parents will be required to complete group instruction prior to regional center agreeing to fund in-home behavioral services. This requirement applies to children served under Early Start as well as under the Lanterman Act.

Appeal Strategies: Document why group instruction will not adequately address the problem. This may entail demonstrating the critical nature of the child’s maladaptive behaviors, the urgency based on potentially dangerous consequences (self-injury, running away, danger to younger sibling, etc.).

May need to document that delay in convening the class is unacceptable, lack of classes in parent’s primary language, inability of parent to benefit from classroom instruction.

Camp services, social recreation services, educational services and nonmedical therapies (art, music, equestrian, aquatic, gymnastics) are being “suspended” – meaning regional centers will no longer fund these services but the state “may” reinstate funding at some time in the future. 

Appeal Strategies: An exception may be made when “the service is a primary or critical means for ameliorating (improving) the physical, cognitive, or psychosocial effects of the consumer’s developmental disability” or the service is essential to maintaining the person in his home and no other alternative service is available.

Additionally, in some cases may be possible to redefine the service as medical in nature – for example, aquatic therapy in some cases serves as a physical therapy modality for people with cerebral palsy. Recommend getting physician documentation.

There will be a limit on Respite Services. Out of home respite will be limited to no more than 21 days per year. In-home respite will be limited to no more than 90 hours per quarter (30 hours per month).

Appeal Strategies: An exception may be made if one of the following applies:

a) “the intensity of the consumer’s care and supervision needs are such that additional respite hours are needed to maintain the consumer in the family home” or b) “there is an extraordinary event that impacts the family member’s ability” to care for the consumer.

GENERAL STANDARDS 

The least costly provider who can deliver the needed service shall be used unless it is a more restrictive or less integrated service than currently utilized.

Appeal Strategies: Must be able to document that the proposed provider cannot accomplish the goals identified in the consumer’s IPP or properly address the consumer’s needs. May need to demonstrate that the proposed provider does not have appropriate training, language capacity, peer group, physical site needs or other specifics that apply to the particular consumer.

(Note: definition of “least costly” includes ability to access federal financial participation and cost of transportation.) 

Regional centers are prohibited from purchasing experimental or unproven therapies or devices

Appeal Strategies: Must demonstrate that the requested service is not experimental, that there is a body of peer-reviewed evidence of its effectiveness.

Regional centers may not pay for medical or dental care when the consumer has other alternative coverage (Medi-Cal, Medicare, CHAMPUS, private insurance, CCS, IHSS) but chooses not to pursue that coverage. This proviso applies to children served under Early Start as well. 

Appeal Strategies: Regional centers can require the consumer to appeal a denial from one of these alternative insurers unless they determine that the appeal has no merit. Accordingly, one should document how the requested service/treatment is clearly outside the accepted coverage available from the insurer. (Note: the new language does not require consumers to exhaust every existing generic resource if they clearly do not qualify for the requested service.)

CHANGES TO OTHER SERVICES & SUPPORTS

Access to IHSS hours will be limited. Some people who were previously receiving IHSS hours for domestic services may lose those hours. Some people whose disability is mild to moderate may lose all IHSS hours. Anyone who is receiving 120 hours or more of IHSS per month or who is receiving protective supervision will be exempt from any cuts.

SSI/SSP monthly checks are being reduced to the federal minimum, $830 for a single person and $1,407 for couples. Regional centers are expected to provide funding to make up for this reduction, but only for consumers who are in supported or independent living.

Adults who receive Medi-Cal are losing coverage for “optional benefits.” These include:

All dental care

All optometry – eye exams, eyeglasses, contact lenses

Mental Health Services/Psychology – visits to therapist

Audiology – hearing aids

Podiatry – foot care

Incontinence supplies

Acupuncture

Speech therapy

Chiropractic services

Appeal Strategies: As the payer of last resort, regional centers are required to purchase the above services when they are not otherwise available. 

The Department of Developmental Services (DDS) secured additional funds from the Legislature to cover these services – $7.65 million for dental care; $4.3 million for the other Medi-Cal benefits; $20.2 million to replace lost IHSS hours; and $20.4 million to SSI/SSP recipients who live independently.

SOME POSITIVE CHANGES

• DDS/regional centers will be introducing an Independent Choice Budget model to offer consumers the option of self-directing their own services within a reduced, finite budget amount. Stay tuned for information about this plan which will probably roll out in 2010.

• DDS/regional centers will be introducing a “Custom Endeavors Option” which is intended to promote employment for people who would otherwise be steered to day programs.

Developed by Developmental Disabilities Area Board 10, 7/1/09  

  • Prenatally Diagnosed Condition Awareness Act

     The Down Syndrome Community Celebrates an Important Victory Congress Passes the Kennedy-Brownback Prenatally and Postnatally Diagnosed Conditions Awareness Act

    New York, NY (September 26, 2008). After three years of advocacy, the U.S. Senate and the U.S. House of Representatives passed S. 1810, the Prenatally and Postnatally Diagnosis Conditions Awareness Act, during this last week before Congress adjourns . The legislation has been an extremely high priority for the National Down Syndrome Society (NDSS) and the National Down Syndrome Congress (NDSC). These organizations and individuals with Down syndrome and their families across the country are convinced there is a need for physicians and other health professionals to provide parents who receive a prenatal or postnatal diagnosis with updated, evidenced-based information about Down syndrome.

    U.S. Senators Edward Kennedy (D-MA) and Sam Brownback (R-KS), original co-sponsors of the bill, came together to pass S. 1810. The bill passed the Senate by unanimous consent on September 23rd and passed the House by a voice vote on September 25th.

    The Prenatally and Postnatally Diagnosed Conditions Awareness Act ensures that pregnant women receiving a positive prenatal test result and parents receiving a postnatal diagnosis will be more likely to receive up-to-date, scientific information about life expectancy, clinical course, intellectual and functional development, and prenatal and postnatal treatment options . It offers referrals to support services such as hotlines, Web sites, information clearinghouses, adoption registries, and parent support networks and programs specific to Down syndrome and other prenatally diagnosed conditions. The information that is all too often being provided in these situations is out-dated and inaccurate. The treatment options, functional development, opportunities and accomplishments of individuals with Down syndrome have improved dramatically over the years, yet decades old stereotypes still persist. It is critically important for healthcare professionals, families and society to update their knowledge and their perceptions about individuals with Down syndrome.

    NDSS, NDSC and affiliate groups across the country, have worked for almost three years to bring the bill to passage. J. David Hoppe, NDSS Governmental Affairs Committee Chair, worked tirelessly with Members of Congress to ensure the bill would be considered despite competing time demands in Congress. “With one small eight-page statute we have the power to brighten the future for people with Down syndrome and their families, by breaking stereotypes and dispelling myths”, states Hoppe.

    NDSC and NDSS and appreciate the hard work of the Members of Congress who championed the bill in the Senate and the House of Representatives—Senators Edward Kennedy and Sam Brownback, Congressmen James Sensenbrenner and Tim Ryan.
    Other members of Congress who provided invaluable assistance and support- Senator Harry Reid, Speaker Nancy Pelosi, Majority Leader Steny Hoyer, Senator Mitch McConnell, Congressman James Clyburn, Minority Leader John Boehner, Congressman Roy Blunt, Congressman John Dingell, Congressman Joe Barton, Senator Jon Kyl, Congressman Pete Sessions and Congresswoman Cathy McMorris Rodgers.

    NDSS and NDSC would like to thank the members of the Trisomy 18 Foundation and their leadership who were diligent and stalwart supporters in the effort to pass the bill.

    NDSC and NDSS would also like to thank their affiliates and the thousands of individuals with Down syndrome, parents, families and friends who have worked tirelessly during the three-year effort to pass the legislation. 

  • Financial Security Accounts for Individuals with Disabilities (FSAID)

    Rep. Ander Crenshaw (R-FL) introduced the Financial Security Accounts for Individuals with Disabilities Act of 2007 (HR 2370) in the House and Sens. Bob Casey (D-PA) and Orrin Hatch (R-UT) introduced the companion bill, Financial Security Accounts for Individuals with Disabilities Act of 2008 (S 2743), in the Senate. Both of these bills would establish tax-exempt financial security accounts for individuals with intellectual disabilities and not jeopardize benefits. Funds in the accounts will pay for important expenses such as:

    • Education
    • Medical care and dental care
    • Transportation
    • Moving
    • Assistive technology
    • Housing and Transportation, after the age of 18
    • Employment coaching and training

    The purpose of these accounts is to establish a savings instrument for individuals with disabilities and their families to provide them with the same flexibility, portability, and tax advantages that are available to all other Americans and their families. These accounts are not intended to meet the long-term support needs of individuals with intellectual disabilities. The legislation is built on the premise that persons with disabilities should be encouraged and supported in their efforts to save in order to create an independent and meaningful life just as other Americans strive to do.

    Contact your Representatives and Senators today. Ask them to cosponsor HR 2370 and S 2743.

    ACTION REQUESTED

    We are asking that you contact your Senators and Representatives, via telephone or fax, to build support for the aforementioned bills related to the Down syndrome community.

    For more information, contact: Sara Hart Weir, National Down Syndrome Society (NDSS), at sweir@ndss.org, or (202) 312-7475; or Susan Goodman, National Down Syndrome Congress (NDSC), at SusanG1961@aol.com, or (301) 570-8892.

Other Issues

IDEA Fairness Restoration Act - woodsmalllawgroup.com   



Connect to updates on topics related to Down syndrome

ADVOCACY RESOURCES

Please Note: These resources are provided solely for your consideration and The Down syndrome Association of Los Angeles makes no endorsement of any agency or their services.

ACT Advocating Change Together
1821 University Avenue West, Suite 306-S, St. Paul, MN 55104
Tel: 800-641-0059
Website: www.selfadvocacy.org
Advocating Change Together (ACT) is a grassroots disability rights organization run by and for people with developmental and other disabilities. ACT's mission is to help people across disabilities to see themselves as part of a larger disability rights movement and make connections to other civil and human rights struggles.

ASK - Advocates for Special Kids
Internet Only
Tel: 310-480-9310
Website: www.advocatesforspecialkids.org
Supports parents in the Los Angeles area through a website, e-group and parent meetings.

The Arc of California –Monday Morning Memo
Website: www.arccalifornia.org/monday_morning_memo.htm
The Monday Morning Memo covers legislative activity in the state of California that effects individuals with disabilities.

CalTASH
Shirley Rodriguez, 1242 Market Street, San Francisco, CA 94102
Tel: 415-503-4460
Website: www.tash.org/chapters/caltash/  
CalTash supports the inclusion and full participation of children and adults with disabilities in all aspects of their communities as determined by personalized visions. Parents should contact board members through the web site.

Developmental Disabilities Area Board 10
Roberta Newton, 411 N. Central Ave, Suite 620, Glendale, CA 91203
Tel: 818-543-4631
Website: www.areaboard10.org
Area Board 10 covers the Regional Centers in the Greater Los Angeles Area to ensure that people with developmental disabilities get the services they need. The mission of the Area Board is to protect and advocate for the civil, legal and service rights of persons with developmental disabilities and to ensure that the support and services they receive are of the highest possible quality.

Office of Clients’ Rights Advocacy (OCRA)
Toll Free Number: 1-800-390-7032
STATEWIDE TTY TOLL-FREE NUMBER 1-877-669-6023
A full list of local offices can be found in our Resource List.
The Office of Clients’ Rights Advocacy (OCRA) is a statewide office run by Protection & Advocacy, Inc., through a contract with the California Department of Developmental Services. OCRA employs a Clients’Rights Advocate (CRA) at each regional center. The CRA is trained to help protect the rights of people with developmental disabilities.

Protection & Advocacy L.A.
3580 Wilshire Blvd, Suite 902, Los Angeles, CA 90010
Tel: 213-427-8747
Website: www.pai-ca.org/
Protection & Advocacy, Inc. (PAI) is a nonprofit agency that provides legal and other advocacy assistance to people with disabilities.

Stockton Advocacy Group
Allyson Leigh Stockton, MA, 27570 Rondell Street, Agoura Hills, Ca 91301
Tel: 818-590-0672
Services Provided: Education advocacy and Consulting

Team of Advocates for Special Kids (TASK)
100 W. Cerritos Avenue, Anaheim, CA 92805
Tel: (866) 828-8275 (toll-free in California)
Tel: (714) 533-8275
Website: www.taskca.org
TASK serves families of children aged birth to 22 years of age under IDEA and other systems mandated to provide services to individuals with disabilities.