Informational Meetings will be held at each of the 12 Community MH/MR Centers. These meetings will be held during the regularly scheduled FDSS meetings and will discuss why people with developmental disabilities are at increased risk of sexual abuse.

Educational classes for families will be held at locations around Philadelphia. Sexuality and risk reduction program will answer questions and teach families how to reduce the risk of sexual abuse for people with developmental disabilities. Practical information that applies to people with many different abilities will be presented.

Support Groups for people with developmental disabilities will be held at locations around Philadelphia. These clinical groups are designed to provide supports to people with developmental disabilities who have been sexually abused. The groups will consist of eight sessions; each group will be 2 hours long. The cost is $1.00 per session.

For more information, for dates, and for an application, contact Nancy Nowell, Safer Communities, Resources for Human Development, (215) 836-1111, or E-mail NKNowell@aol.com.

By Molly Frantz and Bob Beale, Consultants
(Click here for full report)

Philadelphia Mental Retardation Services (MRS) has recently begun to plan for changes in the system for intake, evaluation and supports coordination of individuals with mental retardation. Supports coordination is the new term for case management. This planning is part of a larger process being undertaken by Philadelphia MRS, in conjunction with the Pennsylvania Office of Mental Retardation to "transform" the community mental retardation system so that it is more responsive to consumer and family needs and choices. In addition, changes in the procedures for registration and supports coordination are needed because of increased reliance on funding through the Federal Waiver programs.

As a first step in the planning, a series of focus group meetings was held during September and October 2001. Consultants to MRS, Bob Beale and Molly Frantz facilitated the meetings. Five community meetings were held in different parts of the city in order to be accessible to family members. A meeting was held with the consumer organization, Speaking for Ourselves, and several meetings were held with providers, base service units and other interested parties. Over 160 people attended these meetings, about half of whom were consumers or family members. At each meeting, attendees were asked to consider the following:

What characteristics of the current system should be preserved?

What characteristics of the current system should be changed?

What are the desired outcomes of the case management system?

Are there any special issues to be considered with reference to children with mental retardation and their families?

What issues should be considered during a transition from the current system to a new system?

What other issues, not included above, should be considered?

Recently, the consultants submitted a report summarizing the most important issues identified by the groups. (Click here for full report). Highlights from the report include:

Philadelphia MRS should maintain local sites for access to community mental retardation services and delivery of supports coordination.

There should be a uniform system for registering for mental retardation services and for determining eligibility. Information should follow the consumer and family, so that people don’t have to tell their stories over and over if they move from one area of the city to another.

Across the city, there should be more uniformity in the structures, policies and procedures for supports coordination. Individuals and families should be able to obtain consistent, reliable information about the system and their services.

Recruitment and retention of qualified staff is a major issue. Everyone is concerned about turnover and the constant need to reestablish relationships between supports coordinators, consumers and their families. Most groups suggested that there should be smaller caseloads and higher salaries in order to attract and maintain good staff.

A caring relationship between the consumer and family and the supports coordinator is a vital component to quality service.

Consumer and family input needs to continue and be enhanced.

Consumers and families need to have choice of services and supports, providers, and supports coordination agencies.

There should be specialized supports coordination services for children, with good communication with schools and other child serving organizations.

Improved technology will be critical to the success of the registration and supports coordination process.

Philadelphia MRS must be prepared to take a leadership role in the system.

Philadelphia MRS is in the process of reviewing this report and developing next steps in the process. It is anticipated that additional opportunities for input will be provided in the near future. If you would like a copy of the full report, please contact Elayne Blender, 215-685-5528.

A workshop panel of four at My City, My Place, facilitated by Bonni Zetick, Ph. D., discussed housing options. If you are looking for accessible housing, as Jackie Mendez-Wilson had been, the quality you need to have the most of is patience. The Ludlow Community Organization, which constructed the house that the Mendez-Wilson family was finally able to move into, took three years to complete construction. Even then, there were several problems such as a basement that flooded and a bathroom that had to be redone with a wheel-in shower. Because Jackie had had several accidents in the other house while moving Jose up and down the steps, now that the family has been living in the accessible house for a while, it was worth the wait!

Sue Crossley, Director of Residential Living Options from Chester and Montgomery Counties, works for an organization that helps people with all types of disabilities obtain housing. In the past three or so years, sixteen people have purchased houses with the help of her organization. The agency works with first time home buyers in all aspects of purchasing housing from counseling to down payment help to closing costs. They work with the Pennsylvania Housing Finance Agency for remodeling, and has worked with Habitat for Humanity to build a house from scratch. She emphasized that one must be patient; there has been nothing under two years. In addition to working with generic housing agencies, she also works with realtors, families, and high school students who helped with the moving and packing.

Ms. Crossley told about two young men who did not know each other initially, for whom she was able to get initial funding for two years from the Philadelphia Foundation. She was also able to find a single mom with a small child, and set up a family type situation, which has worked out well. They are part of the consolidated waiver and chose their own Provider.

Ms. Crossley then introduced Miriam, the wife of Shannon, whose families are in favor of the couple being together. With their combined incomes, and with their parents’ help, they are buying a condo. They both love having their own place and have a Life Skills worker once a week to check on them and help them to manage their money.

The Director of Special Housing Needs Housing for the City of Philadelphia, Dainette Mintz, shared a lot of good information. She named six agencies that can be of help with housing for people with special needs. The agencies are: Pennsylvania Finance Housing Agency, HUD, the V. A. Fannie Mae, Federal Housing Loan Bank of Pittsburgh, and the City of Philadelphia, housing and counseling program, for either renting or buying. The Association for Retarded Citizens, Philadelphia Chapter’s president, Gerald Weisman and acting executive director, Donald A. White, announced that ARC/Philadelphia had received a bequest that stipulated it be used to develop housing. Plans are now being made to gather needs information, coordinate with other housing resources and MRS, and develop options.

Housing Resources in this Article

Dainette Mintz, OHCD, Director for Special Needs Housing, Office of Housing and Community Development (OHCD) 215-686-9789

Sue Crossley, Executive Director, Residential Living Options, 610-518-6242, scrossleyrloinc@aol.com

The National Low Income Housing Coalition’s Out of Reach 2001, its annual report on the lack of affordable housing, reports that a worker would have to earn a "housing wage" of $13.87 an hour to afford the U.S. Median Fair Market Rent for a 2 bedroom house or apartment. The report goes on to cite data from Priced Out in 2000 showing that the gap is far worse for an individual with a disability who relies on Supplemental Social Security Income. Out of Reach 2001 is available online at
www.nlihc.org and Priced Out is available at www.c-c-d.org/doors.html   (Source: The Arc of the United States).

By Dan Winterstein, Mental Health Program Analyst

The MH/MR Coalition, a stakeholder group comprised of provider, county and advocacy organizations, has worked for two years with members of the General Assembly, the Governor's Office and the Department of Public Welfare on addressing the direct care worker recruitment and retention crisis that places the continuity and quality of care for Pennsylvania citizens with mental illness and mental retardation at great risk. Providers have reported, for some time, the increasing difficulty in recruiting and retaining direct care staff. A low starting salary coupled with minimal salary increases over time and the need to address increasingly complex consumer needs, have led to the recruitment and retention crisis. In many agencies, vacancy rates continue to soar, even as standards are lowered. Basic literacy skills are now often lacking in those willing to accept full-time work. Others hold two full-time jobs and may be employed by more than one agency. The shortage and turnover of direct care workers in mental health and mental retardation community programs threatens the quality of services for over a quarter of a million Pennsylvanians with mental illness and mental retardation.

The Governor recognized the issue and included an additional $17.5 million state appropriation in his budget proposal for the FY ending June '02 to address community-based mental health and mental retardation direct care worker recruitment and retention. While the Governor's effort was helpful and appreciated, the Coalition continued to advocate for the funds necessary to adequately address the problem. In response to an outpouring of support from members of the General Assembly, the statewide Mental Health/Mental Retardation Coalition (MH/MR Coalition) and thousands of Pennsylvanians, Representative Ray Bunt (R-Montgomery) offered an amendment to the state budget that was overwhelmingly approved by a vote of 199-0.

The amendment would have allocated an additional $50 million state dollars to begin to address the recruitment and retention crisis for community-based mental health and mental retardation direct care workers. Unfortunately, the additional funds were not contained in the final budget approved by the legislature and counties were left to allocate the $17.5 million among direct care workers.

Philadelphia received approximately $5 million to be divided among mental health and mental retardation workers. There are currently a total of 5,118 direct care workers and front line supervisors eligible for assistance under the recruitment and retention initiative. Eligible staff include direct care and front line supervisors' positions in MH and MR residential and MR day/vocational programs.

Current starting salaries from $ 7.00 per hour to more than $11 per hour at some agencies. From information received from all provider agencies, we know that most vacancies occur in positions that pay employees less than $8.50 per hour. Consequently, a larger proportion of available funds were directed to those making less than $8.50 per hour, with the remaining amount going to those who earn more than $8.50 per hour.

However, the surveys conducted by various provider groups also indicated that the reason staff stay in their jobs often has more to do with a sense of being valued than any other factor. Staff who feel they are treated fairly, work in safe environments and have good communication with supervisors, management and peers tend to remain in their jobs for longer periods of time.

As a result, each agency was recently asked to submit a comprehensive recruitment and retention plan that addresses current efforts being made in recruitment, training, supervision and staff recognition, as well as plans for spending its allocation on either increased salaries or non-salary enhancements. Upon approval of those plans, monies will be forwarded to providers for distribution among direct care workers.

It has become clear that the recruitment and retention problem is one that has grown over many years. It will not be resolved in a single year. Meaningful solutions must be developed and implemented over an extended period of time. These efforts must include both increases in starting salaries, benefits, training and other creative efforts to recognize the vital work direct care staff perform. The funds made available this year mark a first step in what we hope will be a multi-year effort to improve the salaries, benefits and working conditions of direct care workers.

With the commencement of a new school year came restructuring within the School District. The shift from 22 cluster offices to 10 new Academic Area Offices (AAOs) occurred as a result of recommendations made by Interim CEO, Philip Goldsmith, to streamline offices and focus employees on the mission of providing quality education to the youth of Philadelphia. (This article reprinted from Transition Times, Fall 2001.)

New Academic Area Offices are –
Central AAO (former Franklin & William Penn Clusters)

Wanamaker School, 215-684-8487, Special Education Lead: Renay Boyce

Central East AAO (former Edison & Kensington Clusters)

Rivera Building, 215-291-5680, Special Education Lead: Burt Hamilton

Central North AAO (former Gratz and S. Mansion Clusters), 215-684-5132, Special Education Lead: Gwen Lewis

East AAO (former Frankford & Lincoln Centers)

Swenson Skills Center, 215-961-2066, Special Education Lead: Stephanie Battallio

North AAO (former Fels & Olney Clusters)

Grover Washington MS, 215-456-0998, Special Education Lead: Kathy Marshall

Northeast AAO (former Northeast & Washington Clusters)

Fitzpatrick Kindergarten Annex, 215-281-5903, Special Education Lead: Henry Gross

Northwest AAO (former Germantown, King & Roxborough Clusters)

Leeds Middle School, 215-248-6684, Area Academic Officers: Linda Silverberg & Dr. George Schuler

South AAO (former Audenried, South Phila & Furness Clusters),
215-351-7445, Special education Lead: Jim McAnulty

Southwest AAO (former Bartram & West Phila Clusters)
215-471-8334, Special Education Lead: Susan Levy

West AAO (former University & Overbrook Clusters)
215-471-2271, Special Education Lead: Cynthia Painter

By Marianne Roche

Special Thanks to Elaine Thilo, MRS and Molly Boyer, OMR

Q: My Support Coordinator/ Case Manager told me that my daughter qualifies for the Person Directed Support Waiver (P/FDSW). My daughter has been receiving FDSS funds. Should I enroll her in the waiver even though it is capped?

A: Yes, you should enroll your daughter. We urge you, and everyone who is qualified, to enroll in the P/FDSW. The Waiver is a funding stream in which the Federal government matches money the State allocates (for every dollar state funds, the federal government provides approximately one dollar). This federal program gives participants certain rights, such as the right to appeal and a commitment to continuation of services that other funding streams do not (for example, FDSS).

For individuals who live at home, P/FDSW offers the opportunity to obtain services and supports that meet your daughter's needs. The maximum amount available through P/FDSW is $21,125, based on their unique circumstances and needs of your family. This amount is significantly higher than the grant that is typically available through FDSS funds. Participation in P/FDSW does not stop a person from applying for and/or receiving FDSS funds, which are greatly valued by families due to the flexibility they offer.

There is no liability (fee) for services in the Waiver. To be qualified and maintain financial eligibility for the Waiver, the individual can have assets of no more than $2,000 and a monthly income of no more than $1,600.

If you and your family member with mental retardation are in the Waiver , you have a choice of eligible providers of service. The Service Coordinator/ Case Manager will monitor the services that your family member receives. If you are not satisfied with the services, or if there are difficulties with them, you also have the right to due process and the protections that it affords.

The Waiver gives Philadelphia Mental Retardation Services the opportunity to greatly expand their services to individuals using waiver funding. The Waiver has also provided Philadelphia MRS the ability to increase services to individuals whose needs have become greater over time. There are approximately 500 people in the P/FDSW in Philadelphia today. More information about P/FDSW is available on the Web at: http://www.dpw.state.pa.us/omr/omrcom.asp 

By Sharon Young, FDSS Team

On Thursday December 20, 2001, the FDSS Steering Committee met and discussed many items including planning for Mental Retardation Awareness Month and the annual luncheon/installation of officers.

Resource Developer – Freda Egnal introduced Janet Williams, the new Resource Developer. Janet, a parent from the Warren Smith BSU, and past secretary of the Steering Committee, will be identifying community resources and supports and helping family members, staff and consumers build connections for Mental Retardation Services. She will be a major contributor to the Family Forum, and the point person for the upcoming computer training for families, and more.

Advocacy – The Steering Committee expressed concerns regarding the State deficit and the potential impact this deficit will have on the Pennsylvania Waiting List Campaign Initiative and funds for the Direct Care Staff Recruitment and Retention Initiative. The Committee made it clear that these Initiatives must not be deleted. These funds must remain intact. Freda Egnal will contact Shelia Stasko for additional information.

Training - Families were encouraged to sign up for Essential Lifestyle Planning Training for Families on March 4-6, 2001. Michael Smull will facilitate this training. See calendar for more information.

TANF Alert – Sharon Young distributed information about TANF (Temporary Assistance to Needy Families). The 5 year (60 months) time limit for TANF recipients receiving cash assistance was scheduled to end on March 3, 2002. According to Community Legal Services, the deadline was extended to June, 2002. TANF recipients are encouraged to take advantage of the Time Out Opportunities by enrolling in the Maximizing Participation Project (MMP) via County Assistance Office. The Steering Committee received a sample letter regarding the welfare time limit. People are encouraged to write to Feather O. Houstoun, Secretary, DPW and Governor Mark Schweiker, to request that DPW develop a comprehensive program to provide all families in Pennsylvania the assistance they need. These leaders need to know that time limits will not help families who need more assistance. Mary Curcio, parent representative from Catch, Inc., suggested that the sample letter be revised to include parents caring for children with disabilities. The sample letter only includes Moms fighting substance abuse and unemployment, etc. Consumers with disabilities should make application for Supplemental Security Income (SSI).

Elections – Greta Fleming, parent representative from Warren E. Smith and Amy Kietzman, parent representative from The Consortium Inc., were nominated for the position of Co-Chair and had the opportunity to speak. Jay Costello, current Co-Chair, has completed his two year term. Elayne Blender, MRS, was nominated again for Secretary. The results of the election are that Greta Fleming is the new co-chair and will work with Eileen Cinque, Co-chair from Northeast.

Transformation Update – Liat Richardson, MRS Transformation Supervisor, provided an overview regarding the changes in how the State Office of Mental Retardation will be doing business and their impact at the local level. The Transformation Project Timeline and phases were described. Phase I, Quality Management, encompasses the Independent Monitoring for Quality (IM4Q) Implementation and Incident Management Implementation. Training sessions on the new incident management bulletin for consumers, families, and providers occurred in November, 2001, with additional training to take place in Philadelphia. Health Risk Profiles Implementation is another activity with direct involvement and oversight from Mental Retardation Services and the Health Care Quality Unit in the Southeastern Region. Philadelphia Coordinated Health Care (PCHC).The Office of Mental Retardation implementation of monitoring of counties waiver program is the final activity associated with Phase I. There are currently over 2,000 Waiver recipients in Philadelphia, in either the Person/Family Directed Support Waiver or Consolidated Waiver.

Phase II is the Individual Pilot Phase scheduled for implementation, July 2002. The Person and Family Directed Support Waiver (P/SDFW) will be piloted in four counties. While Philadelphia County and other non-pilot counties will officially be included in January 2003. However Philadelphia will establish new ways of contracting for and purchasing services as of July 2002. The Consolidated Waiver participants will be phased in July, 2003. Phase III is the Financial Phase. According to Liat, the Support Coordinators will help consumers purchase supports and afford choice so that the money can move with the person.

Families had questions about uniform training of Support Coordinators and concerns about estimated individual resources. The concern is that the range of options and choice may be reduced, using estimates based on individual characteristics. A copy of the Individual Estimated Resources protocol was requested. Other issues expressed included lack of personal contact with the computerization of so many activities, the need for including education and training for families, security proof issues, and funding to secure computers for the system. The major question for many families is "What about FDSS ? Is this unique program continuing? Will FDSS be a local option?"

Liat reported that funding has been allocated to hire additional Support Coordinators statewide. The current recommended caseload size for people in the waiver is 50. Consumers will not have to re-register if they move within county or to another county. The information will be computerized and accessible. The computerized system will ensure tight security and have an automatic shut-down system in place. Passwords will be changing every three months. The FDSS Steering Committee decided to write a letter to Nancy Thaler, Deputy Secretary for Mental Retardation, to address some of their questions and concerns.

JOIN US! The Steering Committee would like to see family representatives from all twelve catchment areas. Meetings are open to all, and held on the third Thursday of each month at Vision For Equality, 718 Arch Street, at 10 a.m. Please call Deborah Groom at 215-685-4794 for more information.

Good Schools Pennsylvania is a statewide organization of parents and citizens concerned about adequate and equal public education around the state. It is concerned with fair funding for all the counties in Pennsylvania. It is organized around a number of chapters that meet monthly, write to legislators, hold vigils in Harrisburg, and in general keep education issues in the forefront of people's minds. Religious organizations and colleges have taken the lead on applying pressure to the legislators to find ways to better fund public schools and assure good performance. For more information, E-mail Donna Cooper, statewide campaign director, at donna@goodschoolspa.org

SEPTA riders have the ADA option to ride CCT/ParaTransit with a Zone-2 Trail Pass, instead of tokens or cash. Those who travel frequently may find trail passes cheaper. Passes can be bought on weekly ($28.25) or monthly ($106).

Used medical equipment is free from Aid for Friends: used walkers, canes, commodes, hospital beds, etc. Call Tom Wallin at 215-464-2224.

The Noonan Syndrome Support Group, Inc., provides positive, accurate information about Noonan syndrome and members share experiences and exchange ideas on how to cope. They have a quarterly newsletter and website at www.noonansyndrome.org Contact founder Wanda Robinson at wandar@bellatlantic.net or toll-free 888-686-2224.

Insurance - Adult Basic Coverage – The PA Insurance Department is set to roll out its new Adult Basic Coverage (ABC) Program. ABC will provide health coverage to uninsured Pennsylvanians between the ages of 19 and 64 for a monthly premium of $30. Enrollment in the program is expected to begin as early as February 2002, although it could be later. ABC will provide basic physical health coverage, including preventive care, physician services, diagnosis and treatment of illness or injury, inpatient hospitalization/outpatient services, accident and emergency medical care. To be eligible, individuals must: 1) be between the ages of 19 and 64; 2) resident in Pennsylvania for at least 90 days; 3) have an income at or below 200% of the Federal Poverty Level. (In 2001, this was $1,432 per month for one person and $1,936 per month for two people); 4) provide evidence that his/her employer must not have dropped coverage within the last 90 days. The ABC program is funded with money from the Tobacco Settlement, and its budget is fixed. Therefore, there will only be about 50,000 slots available statewide. For more information, call Pennsylvania Health Law Project at 800-274-3258 or visit www.insurance.state.pa.us/html/abcover.html (Source: PA Health Law Project)

Updates and additions:
FDSS Steering Committee News, 2/11/02
Waiver Q & A, 2/11/02
Did You Know, 2/17/02