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A Comment from Joe Young, Executive Director of DRNJ About the Recent Transplant Issue

Many, many years ago, New Jersey’s P&A received a call from a parent who said that her child with Down Syndrome was being denied a heart transplant by a New Jersey hospital. The initial report to our office was that individuals with cognitive impairments were disqualified from receiving transplants. If my memory is correct, it took just one phone call to get agreement that individuals with cognitive disabilities were not categorically disqualified from receiving transplants.

While not categorically ineligible, the individual would still have to satisfy the clinical criteria for the procedure. It is possible that a person's existing disability may make it more difficult to meet appropriate clinical criteria. For example, guidelines for heart transplants have excluded individuals with some forms of cancer or who are receiving cancer treatments. Active alcohol or (legal) substance abuse usually will preclude a liver transplant.

Most, if not all, transplant guidelines require the individual to be able to comply with immunosuppression protocols. At its simplest, this means the ability to take multiple medications according to fixed schedules, or as needed, and the ability to report changing symptoms to a responsible heath care provider. This was the issue that was raised many years ago, and it appears to be the crux of the current controversy.

It is clearly impermissible to assume that everyone with a cognitive or communications impairment cannot meet the requirements of a post-transplant protocol, especially considering services and supports that may be available from family and other caretakers. It is possible, however, that someone with no capacity to communicate would not meet the clinical criteria. It is also possible that someone with a severe mental illness may be irreparably resistant to a medication regime despite the best efforts of family and other supports.

It is my belief that the NJ Law Against Discrimination and the Americans with Disabilities Act already preclude categorical discrimination against individuals with disabilities in all medical care, including access to transplants. I do not believe that special legislation is needed. In fact, special legislation covering only transplants may give the incorrect impression that discrimination in other aspects of health care is permitted.

Even if an individual is denied a transplant based on the failure to meet the clinical criteria, I believe an aggrieved individual would be able to challenge criteria that are not clinically necessary and have a discriminatory impact. The individual would also be able to challenge what they believe is an incorrect determination that they do not meet a clinical criteria for the transplant.

Both preventing discrimination and access to health care are priorities of DRNJ, which would allow DRNJ staff to assist individuals who believe that they have experienced disability-based discrimination in accessing and receiving health care.

NJ COST Published Report

Recently the New Jersey Council on Special Transportation (NJCOST) published a report "Stranded in New Jersey: Community Transportation...A Service in Financial Crisis". This report describes alternative community transportation funding in a time of declining revenue.

To access the report, go to http://www.njcost.com/2012%20info/2012%20NJ%20White%20Paper%202nd.pdf

Volunteer Income Tax Assistance Sites

Community Enterprises Corporation is pleased to host Volunteer Income Tax Assistance (VITA) sites in Clifton, Freehold, Absecon and Jersey City in collaboration with the Internal Revenue Service, Nova Debt, the National Disability’s Real Economic Impact Tour and Collaborative Support Programs of NJ. They will be helping fellow employees, clients and the local community to prepare their tax returns and claim their Earned Income Tax Credit. They are now taking appointments for individuals wanting to have their 2011 tax returned prepared and e-filed. VITA is a free service to individuals and households earning less than $60,000 annually. They welcome everyone especially people with disabilities, Spanish speaking or who can’t afford to pay to have their taxes done.

For more information on how to file or if you would like to become a certified tax preparer volunteer in either our Freehold, Clifton, Absecon, or Jersey City office, please call or see Peter Stahl at 732-780-1175 ext. 27 email at pstahl@cspnj.org

The Arc Launches Sibling Project with New Partnership

The Arc announced a new partnership with the national Sibling Leadership Network (SLN) and formed The Arc’s National Sibling Council to foster the active involvement of siblings of individuals with intellectual and developmental disabilities (I/DD). The sibling relationship is unique and siblings are critical to ensuring the full inclusion and participation of their loved ones in all aspects of life. The partnership with SLN and the National Sibling Council will connect siblings with each other and offer them opportunities to impact policy, service delivery and the quality of life for millions of Americans with I/DD through specialized programming, events and opportunities to connect.

DRNJ in the News

The Bergen Record recently published an article about DRNJ's Olmstead litigation. The article includes comments from DRNJ's Executive Director, Joe Young and Director of Litigation, Emmett Dwyer. To read the article, go to http://www.northjersey.com/news/135010753_State_fighting_mandate_to_care_for_disabled.html?page=all

Internet Parenting Education and Support Group for Mothers With Psychiatric Disabilities Research Study

The Temple University (TU) Collaborative on Community Inclusion has launched a new research study examining the effectiveness of an Internet parenting education and social support program for mothers with a psychiatric disability. The TU Collaborative is looking for women who are interested in participating in an online parental education course designed to enhance parental knowledge and skills in the following areas: illness management, child development, stress reduction, parent-child communication, and promoting resiliency in your child.

This program also involves Internet social support through a Listserv, which will be co-moderated by a parent with a psychiatric disability and a mental health professional. This group can connect you 24-hours a day, 7-days a week to a community of supportive peers, in your own home or anywhere you can access the Internet. Participants will be compensated up to $100 for their participation in this study.

If you want to participate or would like more information, please send an email to the following address: momsupport@temple.edu.

Life-Changing Apps for People with Brain Injury

Almost everyday we hear of new smartphone applications ("apps") developed for just about everything - from staying organized to hearing better in noisy environments. The BrainLine team sifted through many resources to collect this list of Android apps that could be useful to people with a brain injury - and their families and caregivers. To access the list, click here.

New Jersey's Law Against Harassment, Intimidation, and Bullying

New Jersey has a new stronger anti-bullying law that was effective the beginning of the 2011-2012 school year. It is viewed by many as the toughest anti-bullying law in the country. The new law provides for specific timelines to address bullying that was absent from previous legislation and provides stronger protection for students. It also expands its protections to students of postsecondary public institutions. Below is a link to the New Jersey Department of Education that provides numerous resources in the area of anti-bullying. Particularly helpful is a checklist which can be used by school districts or parents to determine whether the school's anti-harassment, intimidation and bullying policy is in compliance with the new law. For more information, go to http://www.state.nj.us/education/students/safety/behavior/hib

Advance Housing Granted Tax Exemption

The Appellate Division today reversed an earlier decision of the Tax Court and ordered that Advance Housing be granted tax exemptions for their supportive housing programs in several communities in Bergen County.

The Tax Court had previously found that Advance Housing’s supportive housing projects did not meet the statute’s requirement that the property be “actually and exclusively” used for a charitable purpose because the supportive housing model does not require residents to be engaged in treatment as a condition of continuing residency.

Reviewing the facts presented by Advance Housing to support the level of services it provides to its residents and finding that no public policy would be served by requiring residents to receive unnecessary services, the Appellate Division found in favor of Advance Housing’s appeal. The Court concluded that “the integrated charitable program provided by [Advance Housing] to those who live in the properties involved in this appeal is of the type the Legislature sought to benefit through the general "charitable" property tax exemption.”

Obviously, the failure to receive property tax exemptions would have added a significant barrier to the expansion of supportive housing programs in New Jersey.

DRNJ helped to organize the New Jersey signatories to the amicus brief. In addition to Disability Rights New Jersey, local amici included the Supportive Housing Association in New Jersey, the Alliance for the Betterment of Citizens with Disabilities, the Mental Health Association in New Jersey, the National Alliance on Mental Illness of New Jersey, and the Office of the Public Defender.

National amici included the Bazelon Center, Mental Health America, the National Alliance on Mental Illness, and the American Association of People with Disabilities.

The law firm of Lowenstein Sandler filed the brief and represented amici on appeal.

DRNJ Seeks Volunteers for PAIMI Advisory Council

DRNJ is seeking volunteers to serve on its Advisory Council for the Protection and Advocacy for Individuals with Mental Illness Program.

The role of the Advisory Council is to provide independent advice and recommendations to the agency, to work jointly with the Governing Board in the development of policies and goals, known as priorities, and to submit a section of the program’s annual report.

The PAIMI Advisory council meets on a quarterly basis at DRNJ’s offices, located in Trenton. The council consists of current and former consumers of mental health services, parents of minor children receiving services, attorneys, mental health professionals, mental health providers and members of the public with knowledge of mental illness and a commitment to improving mental health services.

DRNJ Advisory Councils work to reflect the racial, cultural and geographic diversity of the State.

• A family member who is the primary caretaker of a minor child who is a current or former recipient of mental health services.

For more information, contact Louan Lukens at 1-800-922-7233 or llukens@drnj.org.

Brain Injury Resource Website

Stephanie Reid-Arndt, chair and assistant professor of health psychology in the University of Missouri School of Health Professions, has launched a resource for people to understand traumatic brain injuries. Developed through a collaboration with the Missouri Department of Health and Senior Services, the website is designed specifically for people who, in their professional lives, may come in contact with people who have suffered brain trauma (e.g. police officers, social workers, military professionals).

The Brain Injury Guide and Resources are available at http://braininjuryeducation.com. If you have questions, please contact Lori Brenneke at Lori.Brenneke@health.mo.gov or 573-751-6246

ABA Adopts Policy Encouraging Expansion of Home and Community Based Services as a Viable Long Term Care Option

At the August ABA Annual Meeting the ABA House of Delegates approved the following as official ABA policy:

Policy Proposal 106A August 2011

RESOLVED, That the American Bar Association urges Congress, and all federal, state and territorial administrative bodies to continue efforts to expand the availability of home and community based services (HCBS) as a viable long term option by:

1. Making HCBS a mandatory service under Medicaid available to anyone who would otherwise qualify for institutional long-term care.
2. Providing comparable financial eligibility standards and procedures for nursing home care and HCBS.
3. Permanently mandating Medicaid spousal impoverishment protections for spouses of HCBS enrollees, as already exist for spouses of institutional long-term care.
4. Allowing Medicaid enrollees to retain sufficient income to pay their reasonable living expenses in the community.
5. Initiating and expanding other HCBS efforts to help people with disabilities of all ages to live with dignity in the community.

DRNJ's Comments Regarding the Comprehensive Medicaid Waiver Concept Paper

DRNJ submitted comments to the Department of Human Services regarding the Comprehensive Medicaid Waiver Concept Paper. To access a copy of the comments in pdf format, click here.

Autism Fact Sheet Translated into Multiple Languages

A collection of faculty, staff and trainees of the USC University Center for Excellence in Developmental Disabilities (USC UCEDD) at Childrens Hospital Los Angeles have translated the CDC “Learn the Signs. Act Early” Autism Fact Sheet into multiple languages to reach underserved populations in CA. The Autism Fact Sheet provides a one-page tool for clinicians to share with families, to raise awareness about developmental delay, which may be related to autism or other developmental disabilities. The Autism Fact Sheet is available in Arabic, Armenian, Farsi, French, German, Italian, Japanese, Korean, Mandarin, Tagalog, Thai, and Vietnamese from http://uscucedd.org/index.php?option=com_content&view=article&id=455&Itemid=426. You can also contact Cary Kreutzer, MPH, RD at ckreutzer@chla.usc.edu to obtain copies or if you have any questions. English and Spanish versions of the fact sheet are available from the CDC at http://www.cdc.gov/ncbddd/actearly/downloads.html.

Vineland Developmental Center Closure Information and Testimony

Governor Christie's proposed budget includes the closure of Vineland Developmental Center. The Department of Human Services released information regarding the planned closure. Click here to see the Department's information.

On May 17, 2011, Joseph B. Young, DRNJ's Executive Director, provided written testimony to the joint legislative committee of the New Jersey Legislature regarding the closure of Vineland Developmental Center. To access a copy of the testimony, click here.

Justice Department's New ADA Rules

Revised regulations implementing the ADA will take effect on March 15, 2011, the Department of Justice announced. The revised rules are the department’s first major revision of its guidance on accessibility in 20 years. The department is also releasing a new document, “ADA Update: A Primer for Small Business,” to help small businesses understand the new and updated accessibility requirements. In addition, the department is announcing the release of a new publication explaining when the various provisions of its amended regulations will take effect. Both documents are available on the department’s ADA website, www.ada.gov.

Justice Department Settles ADA Lawsuit

The Justice Department has reached a settlement with Inova Health System to ensure effective communication with individuals who are deaf or hard of hearing in the provision of medical services. The agreement, under the Americans with Disabilities Act (ADA) and the Rehabilitation Act, resolves a complaint that Inova failed to provide sign language interpreters to an expectant mother and others who are deaf and need interpreters to communicate effectively with health care providers.

Those interested in finding out more about this settlement or hospitals’ effective communication obligations under the ADA may call the Justice Department’s toll-free ADA information Line at 800-514-0301 or 800-514-0383 (TDD), or access its ADA website at www.ada.gov.

Special Education Lawsuit Seeks to Redress Systematic Discriminatory Practices Involving More than 95 Children

On February 2, 2011, Disability Rights New Jersey announced that it intends to join a lawsuit filed against the Dumont, New Jersey Public School District for systematic discrimination against children with special education needs.

To view the press release, click here.

Letter to DOE from NJ Immigration Policy Network

DRNJ joined a long list of education and children’s advocates encouraging the acting Commissioner of New Jersey’s Department of Education to take steps to ensure that the state’s local school districts are not denying enrollment to immigrant and undocumented students. Despite federal and state law guaranteeing access to the classroom for undocumented students, a previous survey found that more than a third of New Jersey’s local school districts continued to require proof of citizenship before registering a child.

To view the letter, click here.

An Important Hearing

An important hearing occurred in federal court on September 22, 2010 at the Clarkson S. Fisher Federal building and U.S. Courthouse in Trenton New Jersey. At that hearing the law firm of Pepper Hamilton appearing on behalf of DRNJ was joined by the Principal Deputy Assistant Attorney General of the Civil Rights Division of the U.S. Department of Justice in arguing for summary judgment in an Olmstead case filed by DRNJ.

For more information regarding this or similar litigation, visit our Litigation Page.

DRNJ Submitted Comments Regarding Proposed Regulations

DRNJ submitted comments to the Department of Human Services On February 4, 2011, regarding the proposed regulations without amendments for DDD eligibility.

For more information regarding this or similar legislative news, visit our Legislative Page.