Available in Alternative Format Upon Request

INSIDE THIS EDITION: Important Legal Protections ............. 2 Statute of Limitations ...................... 4 Special Education Investigation ....... 6 Brain Injury Information Network ... 7 ADA Cases on Institutionalization .. 8 More Active Treatment .................. 10

Outreach to Children ...................... 11 124th Legislative Session ............... 12 Turning 21 and Medical Care ........ 14 Housing Issues ............................... 16 Commitment Law Amended .......... 18 Special Education Regulations ....... 20

Waiting List for Children .............. 22 Outreach in Assisted Living .......... 24 Outreach Activities ........................ 25 Brain Injury Services for Children 26 Accessible Rights Information ...... 28 PABBS Program Update ............... 30

Summer 2010

Board of Directors:

Nicole Bradick, Esq.

President

David Webbert, Esq.

Vice President

Richard O’Meara, Esq.

Treasurer

Corin Swift, Esq.

Secretary

Blair Blaine

Gil Broberg

Melinda Davis

Karen Evans

Debbie Gilmer, M.Ed.

Stephen Gilson, PhD.

Margaret Jamieson

Mark Palmquist

Peter Thompson, Esq.

Jeffrey Young, Esq.

Board Advisory Council

Walter Corey, Esq.

Mary Herman

Debbie Mattson

Jim Phipps, Esq.

Executive Director

Kim Moody

D R C N E W S 10th Annual Membership Dinner

On October 15th, at the Hilton Garden Inn in Freeport, DRC will hold our 10th Annual Membership Dinner. DRC is excited to celebrate 33 years of legal advocacy on behalf of Maine citizens with disabilities. DRC is pleased to welcome Curt Decker, Executive Director of the National Disability Rights Network as our keynote speaker and to present three awards recognizing those who have made significant contri-butions to improving rights, access and inclusion for Mainers with disa-bilities. Mr. Decker may be joined by Congressman Michaud who has been invited to speak.

DRC wishes to again thank the following for their generous contributions to our 9th Annual Membership Dinner

Corporate Sponsor: McTeague, Higbee, Case, Cohen, Whitney & Toker, PA Sponsors: Gil & Laurie Broberg; DRC Board of Directors; MaineCite; Maine Support Network; Murray, Plumb & Murray; Peter Thompson and Associates; The Iris Network; University of Maine Center for Community Inclusion and Disability Studies; and Woodfords Family Services Benefactors: Bangor Savings Bank; Bingham McCutchen; Johnson & Webbert, LLP; mPower; Petruccelli, Martin & Haddow, LLP; Pine Tree Society; and Reben Benjamin and March Supporters: AlphaOne; Corin Swift, Esq.; Maine Equal Justice Partners; Marcia Cooper; Miles Carpenter Insurance; Pine Tree Society; Richard O’Meara, Esq.; and Rosemary Reid

DRC STAFF

Kristin Aiello Attorney Britt Alley Secretary Helen Bailey General Counsel Jodi Benvie Advocate Mel Clarrage Advocate Staci Converse Attorney Marcia Cooper Coordinator Ross Doerr Attorney Karen Farber Advocate Kathy Gifford Secretary Katherine Griffin Attorney J Harper Advocate Kristina Hersom Advocate Mark Joyce Attorney Rick Langley Advocacy Director Kim Moody Executive Director Leeann Mosley Operations Director Fern Nadeau Intake Coordinator Sean Ociepka Attorney Peter Rice Litigation Director Katrina Ringrose Advocate Diane Smith Attorney Sara Squires Intake Coordinator Amy Waterbury Advocate

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Title III of the Americans with Disabilities Act (ADA) and Subchapter 5 of the Maine Human Rights Act (MHRA) prohibit places of public accommodation from discriminating against people with disabilities. Two recent DRC case examples illustrate a couple different types of protec-tions that these laws provide to people with disabilities. One case involved an individual who was denied equal access at a motel be-cause of her service animal; the other involved a client who was unable to access dental services be-cause of physical accessibility is-sues. Both cases highlight the continuing need for advocacy for equal access in the community for people with disabilities.

God’s Dog In the summer of 2009, a DRC client and her family were moving back to Maine from Florida, where they had lived for a few years. The client, who is blind and uses a service animal for a guide, needed to rent a room for her family for a week or so while they looked for an apartment.

She and her family decided to see if they could rent a room at the Morning Star Inn in Lewiston. When they went to check in for a room, the man behind the desk (who turned out to be the owner of the motel) told them that they could rent a room for a week, but it would cost $100 extra for the dog. The client tried to explain that she is blind and her dog is a service animal. She explained that the law prohibited the owner from charging a fee for a service animal. The owner replied with hostility, proclaiming that he didn't care if it was “God's dog,” he would still charge a fee. Further, he said he didn't care about any laws, he would run his business the way he wanted. The client offered to show the owner a card that she carries with her at all times that has a copy of the laws relating to service animals. She also offered to show him the license she received from Guide Dogs for the Blind, the California agency that trained her service animal. The owner refused to even look at the card. Realizing that the owner was not going to comply with the law, the client

T W O D R C C A S E S , T W O I M P O R T A N T L E G A L P R O T E C T I O N S

S E A N O C I E P K A , E S Q . , S T A F F A T T O R N E Y

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and her family left. DRC represented the client in a charge of discrimination before the Maine Human Rights Commission, which found reasonable grounds to believe that the Morning Star Inn discriminated against the client by insisting on charging a fee for use of her service animal. DRC then represent-ed the client in Androscoggin County Superior Court, which entered a judgment against the Morning Star Inn for $20,000, costs, and attorney fees. Twenty thousand dollars is the maximum penalty permitted under the Act. The law in this case was clear thanks to a revision of the Public Accommodation provisions of the MHRA that became effec-tive in July of 2008, which explicitly makes it illegal for any public accommodation to condition the use of a service animal “on the payment of a fee or security deposit.” With-out this rule in place, public accommoda-tions could effectively deny equal access to people with disabilities who use service ani-mals by charging a prohibitive fee.

Maintaining Accessibility A DRC client had long been a dental patient of the Community Dental Center in downtown Waterville. Because her rheumatoid arthritis significantly restricted her ability to walk, she needed to use the wheelchair lift on the 3rd floor of the building where the dentist was located. However, in the fall of 2008, the client received a call from the dental center stating that the wheelchair lift was broken, so she would not be able to access the center. The

client contacted the building manager, who confirmed that the wheelchair lift had been condemned and was not available for use. When asked if the owner was going to replace the lift, the building manager told her that if she gave them $20,000 they would fix it. Because she was unable to access her dentist, the client contacted DRC. DRC represented the client in a charge of discrimination before the Maine Human Rights Commission, which found that both the dental center and the building owner had discriminated against the client by failing to maintain the wheelchair lift, which provided the only accessible route to the dental offices. After the finding of reasonable grounds, the building owner and the dental center worked to secure funding to replace the wheelchair lift. In April, the parties signed an agreement that guarantees that the dental center and the building owner will replace and maintain a new wheelchair lift, once again providing access to people with mobility impairments. This case focuses on an important provision of both the ADA and MHRA regulations that prevents public accommo-dations from “rolling back” accessibility af-ter improvements are made. Both laws re-quire a public accommodation to “maintain in operable working condition those fea-tures of facilities and equipment that are re-quired to be readily accessible to and usable by persons with physical or mental disabili-ties.” This law ensures that once a public accommodation is made accessible for peo-ple with disabilities it will remain that way.

D R C L E A D S S U C C E S S F U L L E G I S L A T I V E I N I T I A T I V E T O E X P A N D T H E S T A T U T E O F L I M I T A T I O N S F O R F I L I N G D I S C R I M I N A T I O N C O M P L A I N T S

K R I S T I N A I E L L O , E S Q . , S E N I O R S T A F F A T T O R N E Y

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As a result of Disability Rights Cen-ter’s legislative initiative, individuals who have been discriminated against now have more time to file charges with the Maine Human Rights Commission. Effective Sep-tember 12, 2009, the time to file a charge of discrimination with the Maine Human Rights Commission has increased from 6 months to 300 days after the act of discrimi-nation. In addition, the new provision al-lows for additional time for complainants to file in court. Last year, Disability Rights Center ap-proached staff at the Maine Human Rights Commission to explore a possible legislative fix to a problem that has plagued discrimina-tion complainants and their advocates for years. Complainants filing employment dis-crimination claims are required to exhaust their administrative remedies by filing charg-es with the Commission. A main purpose of this process is to allow parties a meaningful opportunity to resolve disputes and settle claims. However, due to a massive backlog of cases - over 800 charges filed per year and a staff of just five investigators - cases pend-ing at the commission routinely sat idle for months on end, resulting in lengthy delays that often ran up against the two year state statute of limitations for filing in court. Although complainants could request a right to sue letter and file in court if their case had been filed with the Commission for

at least 180 days, this option was not ideal. It deprived complainants of the opportunity to have their cases fully investigated and to participate in conciliation after the Commis-sion found reasonable grounds to believe that discrimination had occurred. Unfortu-nately, for many complainants and respond-ents who wanted to take full advantage of the investigative process, by the time the commission finished its work there was of-ten little time for conciliation or other reso-lution before the two-year statute of limita-tions would expire. Complainants were then forced to make a decision about whether to file in court rather than focus on the merits of their case and possible resolution. The new filing periods help resolve these problems in several ways. First, the increased time for a complainant to file a charge of discrimination with the Commis-sion means that parties may explore resolu-tion prior to a charge being filed. For exam-ple, an employee who is denied reasonable accommodation at work can take additional time to try to work out an alternative solu-tion with her employer without having to file a charge of discrimination as quickly just to preserve her rights. This is advantageous for employers as well because they can focus on solving problems with their employee ra-ther than defending a charge of discrimina-tion. Second, the new provisions mean that

the Commission may pursue an investigation of a charge of discrimination without con-cern that the two-year statute of limitations is about to expire and the complainant will be prejudiced. If the parties are unable to resolve the case after full investigation, the complainant now has 90 days from receiving a right to sue letter to file in court. Calculat-ing time from the date of the Commission’s action, rather than from the date of discrimi-nation, allows for more flexibility for the parties in investigating and resolving cases. Third, under the new provisions, the Commission now has additional time to con-duct its investigations. Prior to enactment of the amendments, if a complainant filed a charge of discrimination just under six months from the date of discrimination, for example, the Commission would have a maximum of 18 months to complete its in-vestigation, issue a decision and conclude the conciliation process. The Commission is a small administrative agency and, given the volume of cases that are filed each year, this time frame simply was not realistic. Under the new provision, the Commission has a maximum of two full years from the date of filing to complete the investigation. The Commission decision and conciliation pro-cess can then occur in earnest and without the undue pressure of having to file in court prematurely. Finally, the new provisions require that the Commission complete its investiga-tion within two years of the date of filing at the Commission. Throughout discussion of possible legislation, the Commission ex-pressed concern that expanding the statute of limitations significantly may be problematic

for both complainants and respondents be-cause as the years go by witnesses move, memories fade, and cases remain unresolved indefinitely. The statutory requirement that the Commission complete its investigation within two years of filing satisfied the Com-mission’s reasonable concerns. The new filing provisions are not new in the scheme of discrimination complaint filings. The period of filing a charge of dis-crimination with the federal Equal Employ-ment Opportunity Commission (EEOC) has long been 300 days and the period for filing in court under federal law is 90 days after the receipt of a right to sue letter. The changes to the Maine Human Rights Act make Maine law consistent with federal law, which creates uniformity and better understanding of rights and obligations of all parties. Summary of Amendments to the Statute of Limitations provisions of the Maine

Human Rights Act The new provisions ● expand the time for filing a charge of discrimination with the Maine Human Rights Commission from six months to 300 days after an act of discrimination. ● require Commission staff to conclude their investigation of a complaint within 2 years after the complaint is filed with the Commission. ● allow complainants to file a lawsuit ei-ther two years after the act of unlawful dis-crimination complained of or 90 days after the Commission dismisses a complaint, is-sues a right to sue letter, or fails to conciliate a reasonable grounds case, whichever is later.

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I N V E S T I G A T I O N A F F I R M S : S P E C I A L E D U C A T I O N S T U D E N T S C A N N O T B E B A N N E D F R O M A L T E R N A T I V E E D U C A T I O N P R O G R A M S

K A R E N F A R B E R , A D V O C A T E

As the result of a systemic complaint against a central maine school district, for-mer Maine Department of Education Commissioner Susan Gendron issued guid-ance, in the spring of 2010, to all Maine school districts stating that students receiv-ing special education services may not be required to give up their special education status in order to participate in an alterna-tive education program. The complaint filed by Disability Rights Center was in response to the school district’s policy re-quiring that special education students give up their special education eligibility if they wished to attend the district’s alternative education program. Commissioner Gendron’s guidance in Administrative Letter 37, dated 3/16/2010, affirmed that IEP teams make special education eligibility decisions and that these teams may determine whether the services that a student requires can be reasonably delivered in an alternative edu-cation program. Student Assistance Teams (SAT) may make case-by-case determina-tions as to whether specific specially-designed instruction, identified in a stu-dent’s IEP, is capable of being delivered within a specific alternative education pro-gram.

The Commissioner also cautioned that special education students are not, by virtue of their special education eligibility, automatically entitled to participate in al-ternative education programs. Similarly, school districts have an obligation to place students where their IEPs can be imple-mented. The complete Administrative Letter 37 can be found online at http://www.maine.gov/tools/whatsnew/index.php?topic=edu_letters&id=93668&v=article. The Commissioner’s corrective ac-tion plan and investigation report can be found online at: http://www.maine.gov/education/speceddata/documents/ 10032Commishltr.doc.

NOTICE

The Disability Rights Center is al-ways looking for qualified members for our Board of Directors and our Protection and Advocacy for Indi-

viduals with Mental Illness Advisory Council. If you are interested,

please contact Kim Moody at DRC.

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T H E B R A I N IN J U R Y IN F O R M A T I O N NE T W O R K

M A R C I A C O O P E R , C O O R D I N A T O R

The Brain Injury Information Net-work (BIIN) is a creative effort started in the spring of 2009 by the Disability Rights Center, with support from the Office of Adults with Cognitive and Physical Disabili-ties (OACPDS). The BIIN was created to bring together and organize resources and trainings that will expand options to meet the needs of people with brain injuries. Brain Injury can happen to any of us at any time. How would you find doctors, rehabilitation? What questions need to be asked? How would you take care of your family? Our brains control how we feel, how we think, how we behave and how we move. The brain doesn’t heal like a broken bone but we CAN adjust and recover. The BIIN is working to be an interactive net-work to help those impacted by brain injury to live whole, healthy and satisfying lives by being able to access necessary information, treatment, services, supports, and expertise. BIIN partners are an energetic and di-verse group of people and organizations. There are organizations that focus on kids, veterans, seniors and everyone in between. BIIN includes hospitals, residential pro-grams, outpatient neurorehabilitation pro-viders, advocates and community providers. The BIIN also includes the Aging and Disa-bility Resources Centers and 211 Maine. Our efforts include promoting independent living and access to the community.

The goal is to build a sustainable net-

work, which can strengthen existing re-sources and go beyond the familiar disability framework to reach into our communities. We are expanding understanding and aware-ness through outreach, networking and training. The Brain Injury Information Net-work's goal is to ensure that all Maine citi-zens with brain injury and their families have access to information, resources and re-ferrals in order to access the programs and services they need. BIIN is working with our partners to develop and implement an inte-grated collaborative information system that will increase the understanding of brain inju-ry, promote promising practices, share infor-mation between partners, and ensure that individuals and their families are full partici-pants in planning and service delivery.

Check out our website: www.biin.org

Phone: (207) 621-1410 Toll free: (888) 893-0123

email: mcooper@biin.org

Please JOIN us on Facebook

www.facebook.com/BIINME

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The DRC filed two cases to promote our core belief: that persons with disabilities should receive the services they need to live in the community in the most integrated setting possible. Last year marked the tenth anniver-sary of the U.S. Supreme Court’s landmark decision in Olmstead v. L.C. The Court’s de-cision in Olmstead confirmed an important principle of the Americans with Disabilities Act (ADA), that people with disabilities should not be subjected to unwarranted segre-gation and isolation. In doing so, the Olmstead Court applied the “integration man-date” of the ADA regulations, which requires states to “administer services, programs, and activities in the most integrated setting appro-priate to the needs of qualified individuals with disabilities.” This year, DRC attorneys filed two Olmstead cases: one to prevent a young man from unnecessarily entering an institution and another seeking to have three young men moved from nursing homes into the community. Cotten v. Harvey: The Disability Rights Center Prevents A Young Man From Entering A Nursing Home or Other Institution Circuit courts have found that Olmstead “does not imply that disabled per-sons who, by reason of a change in state poli-cy, stand imperiled with segregation, may not bring a challenge to that state policy under the integration regulation without first submitting to institutionalization.” Fisher v. Oklahoma, 335 F.3d 1175 (4th Cir. 2003). Difficult budg-

et times have increased this risk of institution-alization for the most vulnerable members of society. Federal courts from North Carolina to California have entered preliminary injunc-tions stopping states from making budget cuts so deep that they place its citizens with disa-bilities at risk of institutionalization. In March, DRC filed a complaint and motion for a temporary restraining order in Federal District Court against the Maine De-partment of Health and Human Services (DHHS) on behalf of Adam Cotten, a man in his 20’s who was at imminent risk of institu-tionalization. Adam has significant physical disabilities and medical conditions and is also diagnosed with a cognitive disability. Due to his disabilities, Adam needs constant care and supervision. Adam lives at home with his working mother. Adam’s needs were being met through his mother’s assistance, through a MaineCare program that provides in-home personal care attendant services, and by attending his MaineCare day habilitation program (also known as “Section 24” or “day hab”) twenty-five hours per week. On April 1, 2010, DHHS was eliminating its day hab program under which he was receiving services. Adam could not pay for these services out of pocket and his mother needs to work to support the family. This would have left him and his mother with the cruel and impossible choice: Adam would either have to leave his home to go live in an institution, or he could stay at

DRC F I L E S T W O ADA C A S E S O N I N S T I T U T I O N A L I Z A T I O N

S T A C I C O N V E R S E , E S Q . , S T A F F A T T O R N E Y

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home with grossly inadequate care that would damage his health and endanger his life.

What made Adam’s situation particular-ly unfair was that the majority of people re-ceiving day hab services would continue re-ceiving these or similar services after the pro-gram ended. Through new MaineCare billing procedures, individuals residing in institutions would continue to receive day hab. Adam, however, could not receive these services un-less he entered an institution. Likewise, the majority of adults in the community had been placed on the Section 29 waiver, which pro-vides similar community-based services. Un-der Maine regulations, however, Adam could not qualify for the Section 29 waiver because he also receives vital in-home personal care attendant services through another MaineCare waiver program. Currently, the Section 29 regulations prohibit persons from being on two waiver programs at once. Although it ap-pears that DHHS believed the prohibition of having individuals receive services under two waivers at once was a Federal Medicaid re-quirement, there is no such requirement. The DRC intends to continue working with DHHS to revise the regulations so that indi-viduals like Adam are not placed in this situa-tion.

Despite Adam’s mother’s and the DRC attorney’s attempts to resolve the matter with DHHS for months, Adam’s case didn’t settle until the day after it was filed in Federal Dis-trict Court. Happily, Adam continues to re-ceive his day hab services and continues to live in the community with his mother.

Van Meter, et al. v. Harvey: Pending Case Where DRC Seeks To Have Young Men With Cerebral Palsy Move into the Community In December, the DRC filed a com-

plaint in Federal District Court against DHHS on behalf of three young men with Cerebral Palsy who have been confined to nursing homes. Maine Equal Justice Project, the National Health Law Program, and Jef-frey Young of McTeague, Higbee, Case, Co-hen, Whitney & Toker join the DRC in this effort.

Each of the clients are in their twenties and thirties and have severe physical disabili-ties. The lawsuit alleges that DHHS is violat-ing the young mens’ rights under the Ameri-cans with Disabilities Act, the federal Medi-caid Act, and the federal Nursing Home Re-form Act. The young men are seeking to have the Court order DHHS to provide need-ed services in the least restrictive and most in-tegrated setting.

The three men would like to move out of their nursing homes and into a shared home in the community where they can inter-act with their peers and receive all of the ser-vices they need to live a fulfilling life. For the past several years, the young men have repeat-edly sought to move out of the nursing facili-ties and into a home in the community that could meet their physical needs and allow them to live more independently. For months prior to filing this lawsuit, the DRC attorneys and other attorneys involved in this case had been negotiating with the State to re-solve this situation. The young men also have formed an organization, JacobBrewer-Home.Org and are actively seeking ways to leave the nursing facility.

Currently, the parties are engaged in discovery to determine whether there is a class of persons with Cerebral Palsy who are un-necessarily confined to nursing homes.

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A question voiced by patients at River-view Psychiatric Center (RPC) over the years has been “Why do I have to attend the treat-ment mall?” Patients had frequently been told that they must attend a specific number of groups but not why. Patients and advocates used what was available to bring this issue for-ward, the grievance procedure, and filed nu-merous grievances on the inadequacy of treat-ment plans. Recently the question has gener-ated a robust discussion both between the ad-vocates and the clinical staff and among the RPC clinical staff themselves. The positive outcome resulting from these discussions has been that the treatment teams have improved linking specific treatment goals more precisely to individual programs offered on the treat-ment mall and in “on unit” focus groups. These linkages are reflected in written treat-ment plans. Patients are far more empowered by understanding what their participation in spe-cific groups can achieve. For example, an ex-planation of participation in a group such as anger management might be that it pro-vides a forum for learning specific skills, which can translate into a patient's making safer behavioral choices that in turn lead to a higher privilege level and quicker community access and release. In addition, other activities that had his-torically been used to fill schedules and keep patients “busy” such as “current events,” have been retooled. Explanations are now provid-ed to patients as to how the various activi-ties relate to treatment goals and how the indi-viduals' progress will be assessed. Current

events activities can demonstrate how an indi-vidual is able to work in a group, follow in-structions, establish relationships, all of which when documented provide information to the treatment team on a patient’s recovery. Pa-tients know what is being looked at and why it is important. Through RPC in-service training, staff have learned to not just act as attendance monitors for groups but have learned to assess how patients participate in relation to treat-ment goals. RPC treatment group leaders know what to observe and document for as-sessment of progress on goals. By providing a link between a condition, like depression, and a behavior, like isolation, with a group partici-pation description, like “did not join in con-versation” a much clearer and better docu-mented picture is developed of the patient’s recovery strengths and challenges. Clinical staff can then have a more engaged conversa-tion with a patient and a patient can have a specific idea of what recovery looks like in re-al life experiences. This revised approach to treatment planning, selection of treatment mall groups, and establishing measures for assess-ment of progress, shows more respect for pa-tients, involves them more in recovery and aids them in the development of more trusting therapeutic relationships. The better articula-tion of this one aspect of active treatment has helped remove the disconnect between how the RPC staff and the patients view recovery. The result appears to be more patient partici-pation in treatment and fewer treatment con-flicts becoming grievances.

T H E RO A D T O MO R E A C T I V E T R E A T M E N T

J H A R P E R , A D V O C A T E , R I V E R V I E W P S Y C H I A T R I C C E N T E R

O U T R E A C H T O VU L N E R A B L E C H I L D R E N I N F A C I L I T I E S

R I C H A R D L A N G L E Y , A D V O C A C Y D I R E C T O R

In recent months, DRC’s PAIMI staff, with advocate Katrina Ringrose tak-ing the lead, have conducted an ambitious outreach and education campaign targeting children and adolescents in Maine’s psychi-atric hospitals. Regular outreach activities are occurring at Spring Harbor Hospital, Acadia Hospital, and St. Mary’s Regional Medical Center. Monthly visits to these facilities are slated to continue throughout the year. Katrina has negotiated access ar-rangements with these facilities and coordi-nated the development of notification ma-terials to be distributed to child and adoles-cent guardians, alerting them to the fact that DRC staff will be present on these treatment units and will be interacting with youth. DRC staff have provided brief presentations to groups of patients on the psychiatric units. The presentations intro-duce the role of DRC to the young people, and provide a brief overview of patient rights. Opportunities are provided for in-dividual meetings when patients indicate they have concerns and wish to speak to an advocate. A general survey has been con-ducted with adolescents who are interested in participating. The survey is intended to

capture information related to patients’ ac-cess to care and treatment, the quality of those services and of interactions with fa-cility staff, access to educational services, incidents of restraint or seclusion, involve-ment in treatment planning, access to friends and family, etc. The facilities have been cooperative in this outreach campaign, but as you might expect, problems have arisen. Seri-ous concerns relating to the use of restraint practices have been raised with several fa-cilities. In some instances adolescents have come forward to report concerns about themselves or someone else being subjected to excessive or inappropriate restraint. Some children have been found to be lan-guishing in facilities due to inappropriate or non-existent discharge planning or lack of resources in the community. In some cases, educational services have been essen-tially abandoned for some children, leading to lost ground educationally and further stressors for these children to face when they return to their communities. DRC has intervened on these issues where appropriate and continues to be ac-tively engaged in reaching out and assisting the youngest and most vulnerable in the mental health system.

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To receive a copy of our 2009 Annual Report, please call the Disability Rights Center at (800) 452-1948 or 626-2774.

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L E G I S L A T I V E H I G H L I G H T S – 124 T H L E G I S L A T U R E

B E T S Y S W E E T , M O O S E R I D G E A S S O C I A T E S

Once again, this was a very difficult session as state budget revenues continued to decline. The original proposed budget cuts would have severely impacted services for individuals with disabilities, but with the help of American Recovery and Rein-vestment Act of 2009 funds in the form of an enhanced Medicaid match rate, the Leg-islature was able to restore more money and services than we had anticipated. That said, there were still severe cuts that will adversely impact Mainers with disabilities.

The original proposed cuts to DHHS were $91,463,097. In the end, the actual cuts in the biennium were $31,845,779 – a “restoration” of nearly $60 million dollars.

The cuts originally proposed includ-ed elimination of almost all state funded mental health services for non-MaineCare recipients, severe restrictions on hospitali-zations, lab work and x-rays, day habilita-tion services for residents of facilities, re-strictions on the number of visits, and the elimination of Children’s Assertive Com-munity Treatment teams. These cuts were reversed completely so there should be no change in services in these categories.

The 10% across-the-board cuts will remain except for Treatment Foster Care, which will be cut by 3% in administration

and 2% for other children’s residential ser-vices. The home and community based waiver and the supports waiver cuts were reduced to 1% for residential care and 2% for day habilitation.

Regarding PNMI and residential cuts, the reductions were mostly imple-mented, but the changes were in rates and structures, instead of a 10% cut across the board.

Most of the funding for non-MaineCare services for people with behav-ioral health needs was restored. This was a significant achievement. But while this was possible in this budget cycle, it re-mains to be seen if Maine will be able to hold people harmless and continue to pro-tect vulnerable citizens. Because we have become so reliant on federal Medicaid dol-lars for behavioral health and disability ser-vices, the people who don’t qualify for MaineCare but don’t have private insur-ance or enough money to pay out of pock-et for services are very much at risk. The Legislature restored the direct cuts to children and adult outpatient crisis services and ameliorated the 10% cut by giving the department authority to set two rates for outpatient services depending on the ability and willingness of the system to move in a more coordinated, consumer-

focused direction. Crisis programs have an incentive to make more extensive use of warm lines and peer support as well as to increase consumer involvement and make other consumer friendly changes (such as hospital diversions) because those provid-ers will be awarded a higher rate for their services.

$650,000 in new dollars was allocat-ed to BRAP and $100,000 in new dollars for community intervention services. The-se increases were certainly driven by con-sumer need and should provide improved assistance for those already eligible and new assistance for at least a few more peo-ple who are living in the community.

$1,000,000 was allocated to a man-aged care initiative intended to move all MaineCare services under a full managed care contract. We must pay attention to and be involved in this initiative to ensure that people with disabilities’ interests are protected and needs are met.

The restorations that were made and

the small shifts to more consumer oriented services were all a direct result of the calls and the presence that citizens had in Au-gusta. Many of our supporters, clients and friends came to Augusta more than once, to let your voices be heard. It made the difference. Thank you. I fear that such

vigilance will be just as necessary next year and the year after.

Because this is a gubernatorial elec-tion year there will be new upper level management staff in positions that impact people with disabilities as well as new Leg-islators. We must be committed to educat-ing these new leaders and to collectively putting forth our vision for improvements in the system. DRC will be sending out a candidate’s questionnaire in the fall and holding a candidate’s forum in Augusta on September 22nd at 12:00 noon at the Hill Mansion. Mark your calendar! We will post the results of the questionnaire on our website.

As we go to print with this newslet-ter, there are negotiations going on in Washington around the continuation of the increased Medicaid rate. Many of you have been in touch with Senators Snowe and Collins, asking them to vote in favor of this extension. If it is not passed, we will face immediate curtailment orders from the Governor. These are cuts that are outside of the legislative process.

Let’s all keep paying attention, keep

asking questions and keep raising our voic-es together.

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If you are interested in receiving legislative information from the Disability Rights Center please email us at advocate@drcme.org

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Taylor Jalbert, until he turned 21, received home based care 24 hours a day, 7 days a week. On his 21st birthday, when he “aged out” of his program, he was reas-sessed and determined to need only 3 hours of care a day, a reduction of 21 hours a day. Despite this striking reassessment, Taylor’s medical team was in consensus that his needs had in fact not changed when he turned 21; if anything, in recent years his medical condition had deteriorat-ed. Taylor has been diagnosed with spas-tic cerebral palsy and spastic quadriplegia. He is blind, has serious skin care needs, and a permanently dislocated hip. He is non-verbal and non-ambulatory. He has a permanently implanted pump related to medical treatment he requires, and a gas-trostomy tube and a feeding tube for hy-dration and medication administration. Until he turned 21, Taylor had been receiving services under a MaineCare pro-gram called Early Periodic Screening Diag-nosis and Treatment (EPSDT). EPSDT covers services designed to correct or ame-liorate a condition for all Medicaid eligible children regardless of whether the service is included in the Medicaid state plan. DRC challenged Taylor’s recent re-assessments in two separate administrative hearings, each arguing that this young man’s medical needs require the restora-tion of his care to the pre-age 21 level. In

the first appeal, the Commissioner ordered a new assessment addressing his skin care needs, which resulted in a slight increase in weekly care hours and another administra-tive appeal. In the second appeal, the ad-ministrative hearing officer recommended that the Commissioner find that Taylor is eligible for Level V Private Duty Nursing care. The Commissioner is expected to is-sue her final decision within the next month. Currently, Taylor’s mother fills in the hours that have been reduced, some-times working 20, or as much as 40, hours a week. This is in addition to having a full time job of her own. How long she will be able to tolerate the stress of working these additional hours to care for Taylor as well is an open question. DRC is committed to having Taylor remain in his home and receive the critical medical care that he needs. Even though services are capped, his needs may be met under the Private Duty Nursing program. However, if they cannot be met, he will need the additional hours he was receiving under the EPSDT program. DRC will ar-gue that restoring the services he received prior to turning 21 is a reasonable accom-modation under the Americans with Disa-bilities Act.

DRC will rely on an Illinois case, Radaszewski v. Maram, 383 F.3d 599 (7th Cir. 2004). In that case the Illinois protec-

T U R N I N G 21 CA N B E D E V A S T A T I N G T O YO U R M E D I C A L C A R E

R O S S D O E R R , E S Q . , S T A F F A T T O R N E Y

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tion and advocacy agency successfully ar-gued to keep a child at home who had been diagnosed with brain cancer and had suf-fered a debilitating stroke after he aged out of the Illinois EPSDT program. In that case, Eric Radaszewski would have been moved to a hospital, as the state agreed that he could not be served in a nursing facility. However, unlike Radaszewski, in Taylor’s case the state does not agree that Taylor needs hospital level of care, as evidenced by the shocking and questionable assessment

that he only needs 3 hours a day of assis-tance now that he has turned 21. A change such as the one proposed for Taylor by DHHS would be devastating to Taylor and his family. If he cannot get the nursing hours he needs to live at home, he will probably end up in a hospital or nursing home, because his family will not be able to care for him. DRC is fighting to keep him at home.

In the spring of 2010, I was the Disa-bility Rights Center’s student attorney ex-tern from the University of Maine School of Law. The law school’s externship pro-gram provides opportunities for second and third-year law students to work part-time, for credit, at non-profit legal aid or-ganizations and government agencies. The purpose of the program is to provide ex-terns with practical legal experience while furthering the organization’s objectives. This was the first semester that DRC host-ed an extern. I had a fantastic experience at DRC and I hope other externs avail them-selves of this opportunity. Over the course of the semester, I learned a great deal about disability law and had many opportunities to put what I learned into practice. My small caseload and other assigned projects brought me in contact with the Americans with Disabili-ties Act, the Maine Human Rights Act, the

Individuals with Disabilities Education Act, and MaineCare regulations, among other important laws and regulations that affect the lives of people with disabilities. The DRC attorneys found great opportu-nities for me to put this knowledge into practice and serve clients. These opportu-nities included conducting legal research, advocating for reasonable accommoda-tions, and representing a client at an ad-ministrative hearing using my student at-torney license. This was a challenging and reward-ing semester. The staff at DRC were sup-portive and sharing of their expertise with me as I worked on my projects. I also gained valuable legal skills and experiences working with clients with disabilities. Overall, this was a great way to end my law school career and launch into my legal career.

L A W S C H O O L E X T E R N P R O G R A M

M I C H A E L B U R I A N , E X T E R N

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"Your tenancy in your apartment is ter-minated due to your violation of the no pets policy. NO EXCEPTIONS. You are required to leave your apartment within seven days of receipt of this notice"----Notice received by a tenant with a mental illness who was using a service animal. "Patient will be discharged to a homeless shelter"----Entry by a hospital social worker in a chart of a patient who was facing dis-charge from a psychiatric hospital after hav-ing been a patient at the hospital for over three months.

During the course of the last year the DRC received an increasing number of re-quests for assistance from individuals with mental illness who were either at risk of los-ing their housing or were already homeless. As the above quotes show, there were two types of systemic issues that were percolat-ing up through these cases.

The first systemic issue dealt with in-dividuals with mental illness who were fac-ing evictions from their housing. There ap-peared to be lack of understanding by both landlords and caseworkers as to the legal rights contained in both state and federal law regarding the rights of individuals with disa-bilities to seek reasonable accommodations under both state and federal law.

The second systemic issue dealt with some of the accepted misperceptions of the lack of housing resources that were available to individuals with mental illness. There ap-

peared to be an accepted view by many men-tal health workers that applying for housing assistance for their clients was futile in this economy. Applications for housing assis-tance therefore sometimes were not even submitted even though clients met the crite-ria for assistance. The federal Substance Abuse and Mental Health Services Admin-istration (SAMHSA) has identified this lack of knowledge around benefits as part of the reason why so many individuals with serious mental illness are homeless. One of the an-swers SAMHSA gives to the question of "why are so many people with serious men-tal illness homeless?" is that "these individu-als are impoverished, and many are not re-ceiving benefits for which they may be eligi-ble."

DRC addressed the first systemic issue through the legislative process. In 2009 LD 1080, “Resolve, To Create a Working Group to Study Landlord and Tenant Issues" was enacted. The working group, made up of representatives from the landlord communi-ty as well as the legal advocacy community, was tasked to review issues around landlord/tenant law. I was named to this group. Some of Maine's other civil legal service pro-viders were also named to this group, includ-ing representatives from Pine Tree Legal, Maine Equal Justice Partners and Legal Ser-vices for the Elderly. Throughout the sum-mer and fall of 2009 this working group held meetings and eventually proposed a piece of

DRC TARGETS TWO SYSTEMIC HOUSING ISSUES

M A R K J O Y C E , E S Q . , S E N I O R S T A F F A T T O R N E Y

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legislation that amended the various land-lord/tenant laws. This legislation was signed by the Governor and will take effect later this year. The new law includes a pro-vision that allows individuals with disabili-ties, including individuals with mental ill-ness, to avoid being evicted from their hous-ing if they can show that their landlord failed to provide them with a reasonable ac-commodation under either the Maine Hu-man Rights Act or the Federal Fair Housing Act. The other change in the law makes it clear that there is a presumption of retalia-tion for any eviction action that is brought within six months of a tenant filing a com-plaint regarding their tenancy with either the Maine Human Rights Commission or the Department of Housing and Urban De-velopment. DRC addressed the second systemic issue by developing a housing training with Sheldon Wheeler of the Maine Office of Adult Mental Health Services and Melany Mondello of Shalom House who is the Housing Grant Coordinator for much of the state. The training was entitled "Strategies for Social Workers: Basics of DHHS Hous-ing Subsidy Programs and Legal Rights for Clients Who Are Consumers of Mental Health Services." The training allows social workers to receive 3 hours of Continuing Education Credits. The first segment of the training was presented by Mr. Wheeler and Ms. Mondel-lo and focused on providing social workers with information about the various types of housing subsidies their clients may be quali-fied for and the nuts and bolts of ensuring that those eligible for services are applying

for them. I presented the second segment of the training with DRC advocate Kristina Her-som. We focused on ensuring that social workers know what types of legal rights their clients have if they are in danger of los-ing their housing either through the eviction process or by termination of their housing subsidies. We included an in-depth review of the types of appeals that can be brought in the face of a possible termination of bene-fits, along with rights to request reasonable accommodations under the law. DRC collaborated with Mr. Wheeler on this training after filing numerous appeals on behalf of clients who had been denied a housing voucher or received ineffective assis-tance in completing applications by their mental health providers. Every appeal has been successfully resolved and our clients have been issued housing vouchers. DRC learned that some case managers and social workers were making unilateral eligibility determinations for their clients rather than assisting in the application process and al-lowing the housing program administrators to determine eligibility. This led to many individuals remaining homeless for countless weeks or months when they may have been eligible for a voucher. The first training was held at Dor-othea Dix Psychiatric Center and was at-tended by over forty social workers. A se-cond training was held at Riverview Psychi-atric Center in June 2010. For information about upcoming training sessions, contact Mark Joyce at mjoyce@drcme.org.

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M A I N E L E G I S L A T U R E A M E N D S C O M M I T M E N T L A W S

H E L E N B A I L E Y , E S Q . , G E N E R A L C O U N S E L Outpatient Commitment The Progressive Treatment Program (PTP), Maine’s outpatient program that now allows a court to order a person to follow a treatment plan and to commit the individual to the care and supervision of an outpatient service, was due to expire in July 2010. Dur-ing the 2010 legislative session, following heat-ed debate and multiple last minute amend-ments, a majority of legislators voted to both extend and expand the program.

The effectiveness of outpatient commit-ment is debated nationally. We have no infor-mation on its effectiveness in Maine. The original law required DHHS to issue reports in each year starting in 2007 on the measura-ble outcomes of the program. DHHS only issued one report in January 2010, while ex-tension and expansion of the program was be-ing considered. The report did not include an assessment of outcomes and stated “we do not know if the PTP is an effective option.”

No one disputes that in order for out-patient commitment to have any chance of effectiveness, services must be provided. Maine’s PTP was originally restricted to com-mitments to Assertive Community Treatment (ACT) teams and will likely be heavily reliant upon them under the new law. Meanwhile, wait lists for people seeking voluntary admis-sion to ACT teams is slowly growing. Never-theless, the legislature not only did not appro-priate funding to support the PTP, it cut the state general funding of ACT teams by $331,000 over the biennium.

The message this sends to people with

serious and persistent mental illness is confus-ing. Although the legislature’s will to man-date that some people accept services was strong, its willingness to fund necessary ser-vices for the PTP and for those who voluntar-ily seek and wait for ACT services was weak. Many legislators expressed confidence that the law would only affect a small number of the most seriously impaired individuals, but the definition of who is eligible is actually flexible in its requirements regarding functional im-pairments. We can only hope that the courts will not be expansive in their application of the statute.

The legislative changes affect several as-pects of the PTP. Previously only the state psychiatric centers could apply to admit a per-son to the PTP. Under the new law, the chief administrative officers of all other psy-chiatric hospitals and units, the Commissioner of DHHS, and directors of ACT teams may apply. Directors of ACT teams, however, may not apply until DHHS adopts rules.

Previously, services had to be delivered through an ACT program. This is defined as a team that is on duty 24 hours per day, 7 days per week and that minimally includes a psychiatrist, registered nurse, rehabilitation counselor or employment specialist, peer re-covery specialist, and substance abuse counse-lor and may include other professionals. Now the court may commit the individual to the care and supervision of an ACT team or other outpatient facility. Other outpatient facility is not defined.

Commitment to the program previous-ly was only for an initial period of six months

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with a possible extension of 6 months and a maximum of 12 consecutive months. Now the initial and extension period may be for up to 12 months. Potentially more than one ex-tension may be sought as no maximum period is stated in the law.

The requirement that the person be at least 18 years of age was removed, which could open the door for commitment of ado-lescents to services.

The former law had an eligibility re-quirement that an individual must be involun-tarily hospitalized at the time of application for admission to the PTP. The new law re-moved this requirement allowing application to be initiated regarding individuals living in the community.

The new legislation permits a judge to commit an individual to the PTP in the con-text of involuntary hospitalization proce-dures.

There are some limitations placed upon the ACT teams to which a person may be committed. If the application is filed by an ACT team or by a non-state psychiatric hospi-tal, the ACT team must be one that was in ex-istence as of the effective date of the law and it must comply with national standards and ap-plicable laws and regulations. No similar re-strictions apply to commitments to other out-patient facilities or to applications initiated by state hospitals or by the Commissioner of DHHS.

We can only hope that the PTP is im-plemented judiciously and that individuals who seek services voluntarily are not dis-placed or locked out of access to service, as has occurred in other states. Unfortunately, the guarantees are not in the law. We can also only hope that DHHS closely monitors the program and complies with the reporting re-

quirements contained in the new law. Unfor-tunately, past practice is not encouraging.

Inpatient Commitment

The legislation to amend the PTP in-

cluded changes to the inpatient hospitalization law. For reasons that were clearly driven by the need to reduce costs, the legislature elimi-nated the requirement that the court appoint two independent examiners in involuntary hospitalization procedures.

A court now need appoint only a single examiner. The requirement that the examiner be someone other than the individual who ex-amined the patient at the time the initial emergency admission was initiated and who signed the application for admission was re-moved.

The provision for postponing involun-tary commitment hearings where no involun-tary treatment is sought was also enlarged. The court may now postpone the hearing for cause for a period of up to 21 days beyond the originally scheduled hearing. The continu-ance period used to be limited to 10 days. This means that a person may be involuntari-ly held in a hospital for the following periods before getting to court: 3 days on the emer-gency application (or 5 days if the 3rd day falls on a Saturday); 14 days following filing of the judicial petition; 21 day continuance, for a po-tential total of 40 days. DRC has updated its handbook “Involuntary Commitment and Outpatient Services Laws” to include a summary and full copies of the new laws. It may be download-ed from our web site at www.drcme.org. Click publications, then handbooks.

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R E L E N T L E S S A D V O C A C Y PR O D U C E S IM P R O V E D S P E C I A L E D U C A T I O N RE G U L A T I O N S

D I A N E S M I T H , E S Q . , S T A F F A T T O R N E Y

In December, Maine’s Department of Education presented significant proposed changes to Maine’s Unified Special Educa-tion Regulations. DRC determined that a number of the changes would have had a very negative impact on educational services for students with disabilities. In addition to the substance of the changes, DRC and other advocates were gravely concerned about the way that the “emergency” rulemaking pro-cess was being used to change regulations that the Legislature's Education and Cultural Affairs Committee had agreed to just the year before. DRC’s Education Team helped organ-ize families and advocates to attend and de-liver testimony about the proposed regula-tion changes at a public hearing. This was followed by months of work with advocacy groups and members of the Legislature’s Ed-ucation and Cultural Affairs Committee, in particular Senate Chair Justin Alfond, to en-sure that the package of changes did not rush through the Committee and would receive a thorough review by its members. If we had been unable to put the brakes on the process, the regulation changes, some of which could cause harm to children, would have taken effect immediately and remained effective until such time as the legislature took action to change them. DRC, in conjunction with other advo-cacy groups, identified a number of crucial

items that had the potential for significant negative impact on children. The groups fo-cused their advocacy efforts and testimony before the Committee on changes that in-cluded:

Permitting an IEP team to place a student on an abbreviated (partial) school day for up to 45 calendar days;

Changing the definition of educational performance (used to determine spe-cial education eligibility) to use indi-vidual district’s curriculum to gauge student performance;

Changing the evaluation timeline for 3 to 5-year olds from 60 calendar days to 45 school days;

Changing the age for which an IEP transi-tion plan is needed from 14 years old to 16;

Changing the information used to deter-mine eligibility under the Other Health Impaired category (where con-ditions such as ADHD and Tourette’s are contained);

Articulating, and thereby narrowing, the types of information (data) used to de-termine eligibility for special educa-tion—this included defining the phrase “adverse affect,” which currently has no state or federal definition;

Limiting the use of “stay put” to due pro-cess hearings and removing its availa-bility for standalone mediation and

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complaint investigations; and Shortening the statute of limitations for

due process hearings and com-plaints—this is the back-looking time period that a complaint or hearing can address.

All in all, advocacy efforts and the thorough work of the Committee were successful in avoiding negative results for children with disabilities. The Committee found some middle ground on some of the issues and decided to seek more infor-mation in other areas. For example, rather than tie the tran-sition plan creation to the student’s age, the Committee decided that initiation should be in 9th grade, regardless of the student’s age. They also decided that the evaluation timeline for 3 to 5-year olds be maintained at 60 calendar days and that the infor-mation used to determine eligibility under Other Health Impaired must come from multiple sources. The Committee compromised in the area of statute of limitations (SOL), decid-ing on 2 years for both complaint investiga-tions and due process hearings. This com-promise, while not ideal, prevented a more significant proposed loss on the time period a complaint investigation can address. The Committee also compromised on a cap for contracted services. The origi-nal proposal was to establish a cap (where none existed before) on payment for con-tracted services such as physical therapy of-fered by a non-district employee. The pro-posed cap was set at 100 percent of the MaineCare reimbursement rate. Advocates

were very concerned that this change would result in greatly reduced availability of services, as providers could not provide the services for that price. The Committee instead agreed to a cap at 140 percent of the MaineCare rate, with the rate to be deter-mined as of the effective date of the legisla-tion. The Committee also chose to con-vene a group of stakeholders to review three changes about which there was con-siderable concern and strong opposition from DRC and other advocacy groups. DRC and these groups are represented among the stakeholders as are school dis-tricts. A report is due from this stakeholder group in January 2011. These three items being reviewed by the group are:

Definition of educational performance, which is used in determining eligibil-ity for special education;

The rule permitting an abbreviated school day with a time limit of 45 calendar days; and

The data based eligibility determination procedure that includes a definition of “adverse affect.”

These three are now in effect but will lapse on June 30, 2011 if no further leg-islative action is taken. After weeks of work, testimony and compromise, the Committee sent its deci-sions to the Legislature in the form of an amended LD 1741, which passed on the House and Senate floors without issue and was signed into Law by the Governor.

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This winter, after becoming aware that 19 children who are blind or have visual impairments in Aroostook, Cumberland, Oxford and York Counties are on a waiting list for services from a teacher for the visual-ly impaired, Disability Rights Center (DRC) requested that the Maine Department of Ed-ucation (MDOE) embark on an investiga-tion of the provision of all education and early intervention services for children who are blind or visually impaired. Many of the children have been waiting for services since April 2009. As a result of an investigation, per-formed by the MDOE’s Due Process Office, former Education Commissioner Gendron determined that MDOE had failed to make sure that a free, appropriate public education (FAPE) is available to all Maine children who are blind or have a visual impairment. While children in most parts of Maine re-ceive the blind and visually impaired services (BVI) to which they are entitled, the 19 chil-dren on a waiting list were not. Six of those children have now been on the list for more than one year. She also determined that many of the needed evaluations, related to visual impairment, needed by IFSP/IEP teams, are not being completed within the timeline required by state and federal special education regulations. To address these problems, Commis-

sioner Gendron ordered a corrective action plan—a set of tasks that MDOE and school districts must complete to remedy the situa-tion. These tasks include:

A review, by MDOE, of the educa-tional files of all 19 children on the waiting list, followed by an IFSP/IEP team meeting for each child in order to bring about the completion of any required evaluation, a determination of services the child requires, and whatever actions are necessary to se-cure provision of those services.

Statewide training for school districts

about their responsibility for evalua-tion and delivery of BVI services. Dis-tricts will also receive a list of quali-fied service providers.

Following the training, MDOE shall

require that, for all children who cur-rently receive BVI services, their IFSP/IEP team will convene to review the IFSP/IEP in light of the training and any subsequent evaluation re-ports, and make any necessary changes to the services identified in the IFSP/IEP.

Convene a task force to review the

current system for delivery of BVI ser-

D E P A R T M E N T O F E D U C A T I O N M O V E S T O E L I M I N A T E W A I T I N G L I S T F O R C H I L D R E N W I T H V I S U A L

I M P A I R M E N T S

K A R E N F A R B E R , A D V O C A T E

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vices and to deliver, to MDOE, a plan of action including measures to ensure the completion of BVI evalua-tions within the regulatory time frame and the provision of a free, ap-propriate public education to all BVI children/students, and identifying resources that must be put in place in order to accomplish those goals.

Unfortunately, the file review for children currently on the waiting list has not yet begun, though we are hopeful that it will be completed this summer, followed by the training and IEP meetings, for chil-dren not on the waiting list, during the fall of 2010. The task force reviewing the system began its work on April 26, 2010, in hopes

of completing the effort and making its rec-ommendations by mid-June. Representa-tives of Child Development Services, spe-cial education directors, MDOE, Disability Rights Center, Maine’s Division of the Blind and Visually Impaired (DVBI), the Iris Network, parents and others are partic-ipating in the task force efforts. A complete copy of MDOE’s investi-gation report and the corrective action plan can be found online at http://www.maine.gov/education/speceddata/documents/10064rcs_cir.doc.

The Disability Rights Center lists our

Program Priorities on our website www.drcme.org

and seeks public comment on them throughout the year.

To comment on our priorities, please visit our website and click the “Programs” button to view the priorities and

the “About DRC” button to “Contact Us” via email.

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In recent months, DRC’s Protection and Advocacy for Individuals with Mental Illness (PAIMI) program conducted outreach efforts to Maine residents with mental illness residing in assisted living facilities (ALFs). These individuals face great limita-tions and are in many ways vulnerable be-cause they rely upon facility staff not only for their housing but also for their safety, care and overall well-being. We developed a survey to use during visits, and many ALF residents obliged us and answered sometimes personal questions relating to their access to health care and the quality of that care, their access to personal and social activities (both within the facility as well as in the larger community), and their overall ability to be integrated into communities of their choosing. The DRC team selected a number of facilities to visit, making a point of including facilities in re-mote areas. During our ALF visits, we provided an informational presentation regarding DRC’s services as well as an overview re-garding the rights of individuals with disabil-ities. Nearly one hundred ALF residents have attended these presentations this fiscal year. A broad array of questions have been addressed in these sessions, often regarding MaineCare, Medicare and Social Security Disability benefits, as well as matters per-taining to guardianship, individual decision making, and resident rights issues as they present themselves in an institutional set-

ting. Fewer residents participated in the de-tailed survey, but of those who did some clear patterns emerged in their respons-es. Residents who participated in the deci-sion to enter the facility expressed greater contentment with their overall situation there, often reporting that the facility was meeting their medical, emotional and per-sonal needs. They often indicated that they were transported to their medical appoint-ments as needed and the staff followed up with their care plan. They also reported en-gagement in a variety of social activities on a daily basis, including access to religious ser-vices and community outings. As might be expected, individuals who felt forced into entering the facility by cir-cumstances or by a guardian were signifi-cantly more likely to express unhappiness and dissatisfaction with the services provided by the facility. Many individuals were un-happy with the location of the facility they resided in and felt apart from their commu-nities, friends, and family. Many simply op-posed the structured living of a facility and sought to live more independently and with greater individual autonomy. DRC has been able to represent some of these individuals in their efforts to obtain new living arrangements, to return to com-munities of their choice, or in obtaining plans that address their stated goals and that will increase their integration into their communities.

O U T R E A C H I N A S S I S T E D L I V I N G FA C I L I T I E S

F E R N N A D E A U , I N F O R M A T I O N A N D R E F E R R A L S P E C I A L I S T

Each year, the Disability Rights Cen-ter undertakes numerous training and out-reach activities. Perhaps most notable is the monthly outreach conducted at Maine’s pri-vate psychiatric facilities, as well as psychiat-ric units of general hospitals. DRC staff will also visit residential facilities, regardless of the population(s) they serve. These facilities may include community residential (“group”) homes, nursing homes and assisted living and residential care facilities. In an effort to expand our outreach activities, however, the Disability Rights Center has begun developing issue-based trainings, which are offered to community service pro-viders, educational staff and other organiza-tions that serve individuals with disabilities.

One of the requests we most often re-ceive is for DRC to attend an agency staff meeting, in-service or other event to discuss what kind of services the Disability Rights Center provides. Although many recognize the name, some providers seek a greater un-derstanding of what the function of the DRC, as Maine’s Protection & Advocacy Agency is, how we came to be, and how we may be able to assist providers in obtaining necessary services and supports for their cli-ents. Other trainings typically involved spe-cialized topic areas, including: the provision of Special Education Services; the use of Se-clusion & Restraint; Service Animal Laws;

and Housing Assistance Programs / Hous-ing Rights for People with Disabilities. If there is an area you or your agency would like more information on, we are more than willing to work with you in developing an appropriate training. If the issue is not something that we would typically intervene in, we make every effort to refer you to the appropriate entity. If you are interested in discussing training opportunities for your staff, please contact the Disability Rights Center at 1.800.452.1948. Our administrative person-nel will connect you to the appropriate staff, or take down your information for someone to return your call at a later time. Please note, however, that these train-ings are based on the rights of the individual student or consumer, and the programs that may be available to them. These trainings are for informational purposes only, and are not intended to provide legal advice to you or your agency.

C O M M U N I T Y C O N N E C T I O N S: DRC OU T R E A C H A C T I V I T I E S & OP P O R T U N I T I E S

B Y : S A R A S Q U I R E S , I N F O R M A T I O N A N D R E F E R R A L S P E C I A L I S T

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Look for DRC on Facebook

www.facebook.com/disability.rights.

center.maine

T H E C R I S I S I N BR A I N I N J U R Y S E R V I C E S F O R C H I L D R E N I N MA I N E

P E T E R R I C E , E S Q . , L E G A L D I R E C T O R

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Recently, DRC had a case that clearly demonstrates how the lack of specialized neuro-rehabilitation services for children with brain injuries in Maine hurts children and forces them into services they do not need and that do not work. The children must either go without needed intensive re-habilitation or receive mental health services that are not appropriate for brain injuries.

Emily was a 7-year-old girl when she was diagnosed with a brain tumor. During surgery to have the tumor removed, Emily suffered a stroke. Following the surgery, Emily’s life changed dramatically. Emily developed neuro-cognitive defi-cits. She suffered headaches that sometimes resulted in blurry vision. Emily became ob-sessed with food, gaining 100 pounds in two years. She lost most of the use of her left hand. Emily became aggressive and assaul-tive, with most of her anger directed at her mother. She began punching her mother, pulling her hair and throwing things. At school, Emily would swear, throw things or bang her head against the wall. At this point, she was given an Axis I mental health diagnosis, and began what would prove to be a string of crisis unit and psychiatric hos-pital stays lasting more than 9 months. Rec-ognizing her need for neuro-rehabilitative services, her case manager applied for funds for her to go to Lakeview NeuroRehabilita-

tive Center in New Hampshire, a residential facility that specializes in brain injury treat-ment. Emily was clinically accepted but MaineCare refused to pay for the placement.

The application was turned down twice because MaineCare thought Children’s Behavioral Health Services (CBHS) should contribute funding and CBHS refused. CBHS was concerned that MaineCare was trying to “retrofit” children’s residential ser-vices to serve children with brain injuries who had no history of mental illness or be-havioral health needs prior to their brain in-jury. Not only was CBHS concerned that the children’s mental health provider system did not have the expertise to effectively treat brain injuries, it also maintained that chil-dren’s residential services were reserved for children whom CBHS had a statutory obli-gation to serve that is, children with emo-tional disturbances, mental illness, autism or mental retardation not children with brain injuries.

In an email DRC obtained during the case, a MaineCare official wrote that Emily’s case was typical of cases that “fell between the cracks” because even though Emily had a chronic brain injury, her needs were essen-tially behavioral, similar to children with au-tism and mental retardation, not at all recog-nizing that the needs of a child with a brain injury are significantly different than a child with mental health or cognitive issues.

It was only after DRC got involved and challenged the denial of services did the state reluctantly approve funding for her residential treatment services at Lakeview. And it was only after the residential facility said that Emily needed neuro-rehabilitative services because of her brain injury (and not mental health services) that the state reluctantly agreed to fund Lakeview. Emily’s neuro-psychologist was deci-sive in convincing the state that she needed specialized care. In a statement prepared after Emily had been admitted for several months to a long term mental health treat-ment program as a stopgap, he indicated the following:

“I strongly feel that Emily needs an in-tegrated brain injury program to address her multifaceted problems and needs. To date, she has received only piecemeal services, which have been inadequate. Her emotional and motivational problems clearly are the result of her neurological condition… I feel that be-haviorally-oriented residential programs in the State …are not appropriate as the staff in these facilities have little experience with neu-rological rehabilitation…” Finally, more than 7 months after the state agreed to pay for Lakeview, Emily is going to Lakeview. While DRC achieved some limited success in her case, it highlights the huge complexity of the sys-tem faced by families. Emily will have spent nearly nine months in a residential mental health program that no one in-volved in her care thinks is appropriate to her needs. This nightmare began for Emily and her family more than three years ago. Emi-

ly is now ten years old and has spent nearly a third of her young life in crisis, not being educated and not receiving rehabilitation services. Meeting the needs of Maine children with brain injuries remains an issue at a point of crisis. There is currently no sys-tem in place for children’s brain injury ser-vices as exists for children’s mental health services. The children’s residential provid-er network that is in place does not have the expertise to effectively treat or rehabili-tate brain injuries. The only office in state government dedicated to brain injury ser-vices is located within the Office of Adults with Cognitive and Physical Disabilities, and therefore serves only adults. What’s more, the number of children identified as having a brain injury by the Department of Education differs from the number of chil-dren identified by MaineCare. In the face of such a disjointed and conflicted system, vigilant individual and systemic advocacy will be necessary to meet the needs of chil-dren like Emily.

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Look for updates on our website

www.drcme.org

M A K I N G RI G H T S I N F O R M A T I O N A C C E S S I B L E

J O D I B E N V I E , A D V O C A T E

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The rights of citizens who receive de-velopmental services have long existed in Maine law, but until now no fully-accessible version of those rights has been available. In response to that need, I began last year to convene a group of advocates to develop a plain language and illustrated guide summa-rizing those rights for everyone. Our mis-sion was to take the rights granted in state law and translate those important principles into an accessible format, while obviously striving to accurately state the law as it is. This project committee includes SUFU mem-bers Tyler Ingalls, Hazel Hanscome and Kelly Baston; representatives from the Office of Advocacy, Richard Estabrook and Marga-ret Rowland; Developmental Services Train-ing Coordinators Paul Tabor and Laurie Kimball; and Rachel Dyer from the Maine Developmental Disabilities Council. We have been meeting at least once a month since October, reviewing the law and devel-oping language that is both easy to under-stand and faithful to the meaning intended in the law. We now have a plain language draft of a rights manual. While the committee works on final touches to the language for the manual, the second phase of the project is heating up. We have been talking with people from Creative Trails, Spindleworks and Creative Work Sys-tems about their artists lending their talents to the rights manual. We will be working with all three of these programs, which pro-vide support to artists with developmental

disabilities in promoting their work, to de-sign and create graphics to illustrate the rights so that the guide will be more accessi-ble to people who are not able to read or have limited reading skills. A final draft is expected by late fall. Once the manual is printed, we want to make sure that each person receiving services and each of their supporters receives a copy.

Public Forums with SUFU

DRC and SUFU are co-hosting 3 public forums across Maine for the purpose of providing an opportunity for people re-ceiving developmental services to talk about what they like, don’t like, and what they want from their services and supporters. The idea for the forums grew from a discussion at last fall’s SUFU conference. The first forum was held in March at Northern Maine General in Eagle Lake. I went to Northern Maine General’s Commu-nity Supports program accompanied by a lo-cal SUFU member, Kile Pelletier. We met with 20 people (16 people with DD and 4 supporters). We facilitated a discussion about community support services. We asked them what they would do if they were the agency director for a day and could do whatever they wished; they had some wonderfully cre-ative ideas, including opening a working farm and a bakery that would serve the communi-ty, create jobs and help people gain valuable skills. All of the information gathered at

the forum was compiled into a summary and has been sent to Northern Maine General and Developmental Services for comment and response. We are planning two more forums in other areas of the state this summer and fall.

Behavioral Regulations

A long-standing goal of the DRC is to promote strategies to reduce the use of restraint in the service system. Toward that goal, I sat in on meetings of the “3-Person Committee” (comprised of staff of the re-gional Crisis Teams, Office of Advocacy, and members of the Consumer Advisory Board) where Severely Intrusive Behavior Plans are considered and approved. There are more than 160 Severely Intrusive Plans in use across the state. These plans are gener-ally proposed and developed in response to a situation where a provider is supporting someone whom they feel they are unable to keep safe in the absence of such a plan. The process is controversial, as a plan may in-clude aspects of behavior modification, and physical or chemical restraint. Oversight and management of this process needs to be thorough due to the risk of serious rights vi-olations and injury. I sat in on more than 30 reviews cov-ering each region of the state to monitor the process and assure they are only approving the least restrictive plan possible. In April, I wrote a memo to the Department summa-rizing my experiences and providing sugges-tions on how to improve this process. Though it is clear the review com-mittees are thoughtful and careful, I noted

many examples where the regulations gov-erning this process are not being followed. For example, I emphasized the need to con-tinually look at medical issues, mental health issues, communication barriers and environ-mental factors to find out why a person is behaving a certain way and what can be done to prevent or change the behavior so that it is not harmful. Maine regulation states that any intervention used must be less harmful than the behavior it is being used to prevent. This needs to be emphasized rou-tinely by the person’s team and by the re-view committees. The memo was well-received and committee members have asked me to meet with them to share feedback and discuss ideas on how the process can be im-proved. As part of the ongoing discussion about my experience observing the review process, DRC has been invited by Develop-mental Services to serve on a committee to rewrite our current behavioral regulations. This is a wonderful opportunity to impact the manner in which behavior plans are de-signed and considered and to reduce the sys-temic use of restraint and other intrusive procedures while also ensuring that positive behavioral supports are tried before an intru-sive plan is requested. We are also seeking to create clearer procedural requirements for plan submis-sion, review and approval. The committee will meet through-out the summer, to gather feedback from stakeholders and draft new regulations to prepare for the next legislative session. Stay tuned!

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AN UP D A T E F R O M T H E PABSS PR O G R A M

M E L C L A R R A G E , A D V O C A T E

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Over the past several decades the em-ployment rate of persons with disabilities has hovered around 40 percent and hasn’t fluctuated much even when the economy has improved. A quick snapshot of the em-ployment situation in Maine for people with disabilities reveals that there have been sev-eral setbacks in the funding of services due to the recent downturn in federal and state economies. In the past two year state budget cycle the Vocational Rehabilitation (VR) program was cut by more than $300,000 in general fund appropriations. This cut posed the risk of magnified damage to the program as this loss of funds threatened to cost Maine an ad-ditional million dollars in federal matching funds for employment support services as well. Partly in response to strong advocacy from the Governor’s Commission on Disa-bility and Employment and other advocates, VR has been able to leverage other general funds allowing them to secure all federal matching funds. Unfortunately, the Council on Tran-sition has been eliminated from the budget altogether. The COT provided an oppor-tunity for youth with disabilities to gain self advocacy and youth leadership skills and better prepare them for life after school. Similar disappointments have oc-curred at the federal budget level. The Disa-bility Navigator Program which worked at making Career Center programs and ser-vices accessible for Mainers with disabilities

was not included in the federal Department of Labor budget. In Maine, this meant the loss of five full time positions dedicated to Maine’s workforce development system. Again, advocates are working closely with the Department of Labor to ensure that some of the best practices that resulted from the Navigator Program are maintained. Full access to career center programs remains an obligation of the state. On a positive note, VR is phasing out its wait list for services for the first time in a decade. This was possible due to Recovery Act funds and programmatic changes within VR. Additionally, for the first time ever persons with disabilities are specifically cited in unemployment statistics. We need to ade-quately capture information about employ-ment challenges facing people with disabili-ties if we are to contend with those challeng-es. At DRC, our Employment and Public Accommodations team will be kicking off an outreach campaign to educate people with disabilities about the full array of op-tions available to them in seeking employ-ment, and the legal remedies available to overcome discrimination. Challenges exist and we want to play a key role in confront-ing them in partnership with our clients while opening the doors of opportunity for employment, self-fulfillment, and inclusion for Mainers with disabilities.

SAVE THE DATE!!

Candidate’s Forum September 22, 2010

12:00 noon Hill Mansion in Augusta

Confirmed: Elliot Cutler, Paul LePage and Libby Mitchell

Sponsored by: The Disability Rights Center

together with Maine Developmental Disabilities Council, Speaking Up For Us, Maine Parent Federation, Southern Maine Parent Awareness, Autism

Society of Maine, Helping Hands of Maine, Gear Parent Network, Learning Disabilities Association of Maine, National Alliance for the Mentally Ill of Maine, Adoptive and Foster Families of Maine and

Support Affiliation with THRIVE

DRC Needs Your Help! DRC has developed an online survey to collect data on the use of restraint

and seclusion in schools. If you know of a situation in which a child has been restrained or secluded at school, please take a moment to complete our

survey. Thank you!

http://www.surveymonkey.com/s/3KDGJXQ

PO Box 2007 Augusta, ME 04338-2007

MAINE’S FEDERALLY FUNDED PROTECTION AND ADVOCACY AGENCY

Visit us on the web at: www.drcme.org

The Disability Rights Center is supported by funding from the U.S. Department of Health and Human Services Administration on Developmental Disabilities (ADD) and Center for Mental Health Services (CMHS); the Rehabilitation Services Administration (RSA); the Social Security Administration (SSA); the Health Resources Services Administration (HRSA); the U.S. Depart-ment of Education; the State of Maine; MaineShare; the Civil Legal Services Commission and pri-vate donations. Newsletter contents are solely the responsibility of DRC and do not necessarily represent the official view of any of these agencies.

Governor signs Prosthetic Parity Bill into law