World Down Syndrome Day

Help the DSALA reach out to the Los Angeles medical community. Provide the names and contact information of your medical professionals and they will receive current and accurate information on Down syndrome.

Example of letter to accompany materials (sample letter)

Email contact info on medical professionals to gail@dsala.org

Hot Topics - Jan 2010

Action Alert

(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

June 2009

An Urgent Call to Action from the

Lanterman Coalition

Our Supports Are Being Dismantled!

Please Act Today

Governor Schwarzenegger has proposed even more reductions to the supports for people with developmental disabilities and their families, making it a combined cut of over a half billion dollars with even larger cuts to our overall disability community. The Legislature will act any day now on cuts that could have these results:

400,000 people, including thousands with developmental disabilities, could lose their IHSS services
The entire Medi-Cal program will eliminate major important health services and supports.
900,000 children would lose all of their Healthy Families coverage.
Regional center services could be closed and not replaced, and your IPP options could be limited.

Action Needed Now

Tell the Legislators and Governor in your own words:

1. Additional cuts to community services for people with developmental disabilities will cause unacceptable harm and threaten health and safety. Our community has given enough!

2. Support alternatives to bring in more federal funds, seek savings in state-run developmental centers, and generate revenues to pay for the supports our children and families need.

See the second page of this Urgent Call to Action for who to contact now

Action Needed in the Coming Weeks

Stay in touch with at least one of the Lanterman Coalition groups. Win or lose this week, the state budget fight will continue for months.

The Lanterman Coalition is: The Arc of California, Association of Regional Center Agencies, Autism Society of California, California Alliance for Inclusive Communities, California Disability Services Association, California Supported Living Network, Cal-TASH, Disability Rights California, Easter Seals, Family Resource Center Network of California, People First of California, and Service Employees International Union.

Action Needed Now

1. Call, email, or fax (don’t mail) short letters on your group’s letterhead to all of the following key decision-makers. All their numbers are in the 916 area code:

- Your own local state senator and Assembly representative. Be sure to give them your address so they know you live in their districts. If emailing them, please use the web form at www.ArcCalifornia.org, “Write Your Legislators.”

- Governor Arnold Schwarzenegger, 445-2841, 558-3160 (fax), email using the web form at www.ArcCalifornia.org, “Write Your Legislators.”

- Senate President pro Tempore Darrell Steinberg, 651-4006, 323-2263 (fax), senator.steinberg@sen.ca.gov

- Assembly Speaker Karen Bass, 319-2047, 319-2147 (fax), assemblymember.bass@assembly.ca.gov

- Senator Dennis Hollingsworth, 651-4036, 447-9008 (fax), senator.hollingsworth@sen.ca.gov

- Assemblyman Sam Blakeslee, 319-2033, 319-2133 (fax), assemblymember.blakeslee@assembly.ca.gov

- Assemblywoman Noreen Evans, 319-2007, 319-2107 (fax), assemblymember.evans@assembly.ca.gov

- Senator Denise Ducheny, 651-4040, 327-3522 (fax), senator.ducheny@sen.ca.gov

- Assemblyman Jim Nielsen, 319-2002, 319-2102 (fax), assemblymember.nielsen@assembly.ca.gov

- Senator Robert Dutton, 651-4031, 327-2272 (fax), senator.dutton@sen.ca.gov

- Senator Mark Leno, 651-4003, 445-4722 (fax), senator.leno@sen.ca.gov

- Senator Alan Lowenthal, 651-4027, 327-9113 (fax), senator.lowenthal@sen.ca.gov

- Senator Mimi Walters, 651-4033, 445-9754 (fax), senator.walters@sen.ca.gov

- Assemblyman Roger Niello, 916-319-2005, 319-2105 (fax), assemblymember.niello@assembly.ca.gov

- Assemblyman Kevin de Leon, 319-2045, 319-2145 (fax), assemblymember.deleon@assembly.ca.gov

- Assemblyman Bob Blumenfield, 319-2040, 319-2140 (fax), assemblymember.blumenfield@assembly.ca.gov

2. Distribute this Urgent Call to Action to everyone in our community.

January 2009

AREA BOARD 10
Protecting and Advocating for Persons with
Developmental Disabilities in Los Angeles County

GOVERNOR'S PROPOSED BUDGET REDUCTIONS –
MID-YEAR 2008-2009 THROUGH 2009-2010

REGIONAL CENTERS
Unspecified reduction of $334 million (or 10% of the budget). This cut is equal to the expected increase of regional center caseloads over the fiscal year. DDS is expected to work with stakeholders to decide how to implement this cut. Reduction of $141 million, or 3%, to the rates paid to most regional center providers. Reduction of $24 million, or 3%, to regional center operations (staff).

IN-HOME SUPPORTIVE SERVICES (IHSS)
Reduction of $447 million by:
• eliminating domestic service hours (meal preparation, food shopping, laundry, cleaning) for many recipients;
• decrease IHSS workers' wages to the state minimum wage; and,
• institute a share of cost for some people.
These proposals could lead to:
• an increase in regional center costs as consumers in supported living would require an increase in supported living service hours to offset the IHSS reduction;
• increased costs to those in need, who must do more with less; and,
• an increase to counties to maintain wages at their current levels – and if counties do not, it is likely layoffs and IHSS worker shortages will result.

SUPPLEMENTAL SOCIAL SECURITY INCOME (SSI)
Reduction of $27 million by suspending the state portion of the cost of living increases in SSI/SSP.

HEALTH CARE SERVICES & MEDI-CAL
Reduction of $298 million by eliminating Medi-Cal "optional benefits" for adults such as dental, incontinence creams and washes, audiology, psychology, and optometry. This would force people with developmental disabilities to go to emergency rooms to receive necessary care. Reduction of $182 million by changing eligibility for Medi-Cal so fewer people qualify for services. Reduction of $400 million by increasing the share of cost requirement for the Aged, Blind, and Disabled Program. This would increase costs for program participants.

EDUCATION
Reduction of $7.1 billion dollars to general education, which is likely to impact some students with disabilities.

What You Can Do

1. Call your state legislators' offices
You can find out who your state Assembly Member and state Senator is by going to:
• http://www.assembly.ca.gov/defaulttext.asp and click on "Find My District"
• http://www.senate.ca.gov/~newsen/senators/senators.htp & click on "Your Senator".
Tell your legislator how the budget proposals will affect your child and family. Give examples.

2. Visit your state legislators' offices
You can call and set up an appointment to meet with your legislators or their staff person in their local office. Take your child or bring a picture of your child and tell your legislator how the budget proposals will affect your child and family. Include examples.
3. Write a letter to Governor Schwarzenegger
Write a letter to the Governor about the cuts and how they will affect your child and family. Include a picture of your child and family.
Governor Arnold Schwarzenegger
State Capitol Building
Sacramento, CA 95814
Phone: 916-445-2841
Fax: 916-445-4633

4. Write letters to the editors of your local newspapers.
For tips on how to write a letter to the editor, check:
http://tinyurl.com/2nen49 or
http://www.ctnonprofits.org/Content/NonprofitResources/FlexibleContent/4EditorOp-EdTips_1.pdf
Sample Letter to Legislators

5. Pass this information along to your friends and family.

6. Keep informed and up to date. Check:
Support for Families' legislative website
www.supportforfamilies.org/legislative/current.html

Disability Rights California's (formerly Protection and Advocacy, Inc.) Public Affairs page provides information on legislation and budget
www.disabilityrightsca.org

California Disability Community Action Network provides lots of information and you can join their listserv to stay informed
www.cdcan.us

California Budget Project provides information about the state and federal budget for the people of California
www.cbp.org

If you would like to help, learn more and write to your representative.
http://www1.ndss.org/index.php?option=com_wrapper&Itemid=130

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Two bills in Congress: