ADD Program Update

The Help America Vote Act (HAVA), Public law 107-252, was signed into law by President Bush in October 2002. HAVA's purpose is to modernize election equipment, facilitate easy use of equipment by all voters, maintain voter confidentiality and independence, and increase accessibility of voting places for persons with disabilities. I am honored that the Administration on Developmental Disabilities was selected to facilitate the Disabled Voter Participation Program, the section of HAVA pertaining to voters with disabilities. ADD values this new opportunity to assist the President, Secretary Thompson of HHS, and Assistant Secretary Horn of the Administration for Children and Families implement this important program. Our selection to administer this program is due in large measure the outstanding work of ADD's grantees and staff.

The Disabled Voter Participation Program commences with $15 million in Federal funding. Of that money, $13 million is for grants to states and localities for the purpose of improving accessibility in polling places, and the remaining $2 million is marked for Protection and Advocacy Agencies nationwide to assistance individuals with disabilities participate in the voting process.

Grantees of the HAVA disability grant program are required to: make polling places accessible to persons with disabilities, including voters who are blind or deaf, ensure the privacy and independence of voters with disabilities, disseminate information about the accessibility of polling places to individuals with disabilities, and train election officials and workers. All of this should lead to increased participation in elections by people with disabilities.

Increased accessibility for voters with disabilities means more than ensuring adequate accessible parking, ramps, elevators, polling booths that are an appropriate height for voters who use wheelchairs, and other physical accessibility concerns. It also means availability of voting machines that can "talk," large print or Braille ballots for individuals who are blind or who have low vision, materials or interpretation for voter's who are deaf or hearing impaired, simplification of the voting process to make it clear and understandable for older Americans and those with intellectual disabilities, and protecting the privacy rights of voters with disabilities. Voters with disabilities have endured various infractions of their voting rights around the country that include being asked to send in absentee ballots due to inaccessible polling places, the indiscreet practice of being joined in their voting booth by a volunteer who assists them, or in extreme cases, being denied their right to vote. Putting an end to "make-do" practices and rights violations is critical for people with disabilities.

The right to vote is an important part of what it means to be a citizen of the United States. By making our polling places and voting processes accessible to people with disabilities, we help to ensure their ability to exercise that right. Voting provides all people with an opportunity to voice what is important to them, and to select representatives that support similar views. When polling places are inaccessible, voters with disabilities are excluded.

Community inclusion has long been a goal of ADD, and voter participation is a vital part of that. We are thrilled with the advent of a new program that helps us to achieve greater participation, and we look forward to the positive outcomes the Help America Vote Act will realize.

Information on new developments in the Disabled Voter Participation Program will be posted, when available, on the ADD web site at http://www.acf.dhhs.gov/programs/add/HAVAsummary.htm

PROGRAM PROGRESS

Protection & Advocacy Agencies

New CEO/CEO P&A Training

The New CEO/CEO P&A Training was held April 7-12, 2003 in Albuquerque, New Mexico. Debbie Powell, ADD's Acting Deputy Commissioner, and Janice Davis, Developmental Disabilities' Team Leader from our Regional Office in Dallas, attended the training for the first time. Along with Jackie Ezzell and Karen Armstrong, the Federal representatives presented workshops on HAVA, contract issues and the New CEO's Orientation from the Federal perspective. The training was well-attended and highly interactive. Many critical issues were discussed, including ideas for future CEO training. These issues were noted and will be addressed by ADD and our other Federal partners, RSA and SAMHSA, under the P&A training and technical assistance contract.

P&A/CAP 26th Annual Conference

Time is fast approaching for the P&A/CAP 26th Annual Conference to be held May 28-31, 2003 at the Renaissance Hotel. Commissioner Morrissey is taking an active role at this conference. She is presenting workshops on the Program Assessment Rating Tool (PART), HAVA and the Program Performance Report/Monitoring. She will also be a speaker at the opening reception on Wednesday evening. Commissioner Morrissey strongly encourages you to attend her workshops. She is addressing some of the issues that the P&A executive directors presented to her at the Commissioner's Forum in February. This is a great opportunity for you to have access to ADD's senior-level management.

We also encourage you to send your Governing Board/Advisory Council members. As a suggestion from some of the P&A Governing Board members, a half day institute was developed. If it proves successful, this training could be extended to more than a half day. Governance is an issue that we look at carefully when we do an MTARS' site visit. This training will begin the process for making governance a strong component of the P&A system.

Program Assessment Rating Tool (PART)

The Commissioner wishes to thank each Executive Director and their staff who responded to the questions that were sent to you. Our PART team worked diligently to prepare this self-assessment for the Office of Management and Budget. You will hear more about it at the Annual Conference.

Highlight of DD Network Collaboration

The members of the New Mexico Developmental Disabilities Network have entered into a formal agreement for their joint collaborative efforts. They are publishing a newsletter titled "The Developmental Disabilities Network Policy Brief." They have just published their first issue that addresses "Recruitment and Retention of Direct Support Staff in Programs Serving People with Developmental Disabilities in New Mexico." This brief and subsequent policy briefs will address critical issues facing people with disabilities and their families in New Mexico. Please contact the P&A, SCDD or the UCEDD in New Mexico to learn more about this collaboration or to get a copy of their Policy Brief.

For questions or more information on the ADD Protection and Advocacy Program please contact Jacqueline Ezzel, jezzel@acf.hhs.gov

State Councils on Developmental Disabilities

Technical Assistance Institute 2003
Systems Thinking- Future Directions for Councils
The ADD Technical Assistance conference will be held at the Crystal Gateway Marriott on June 2 & 3, 2003. Commissioner Morrissey's luncheon plenary session on the second day is titled - Future Directions for Councils in Challenging Times. The session will highlight the approach and results of ADD's recent self-assessment for the Office of Management and Budget, ADD's plans to improve its monitoring system, and the role that Councils have played and could play in telling the story about DD Act programs and what they mean for individuals with developmental disabilities.

Additional plenary sessions will feature Bob Gettings, Executive Director of the NASDDS and Richard Hemp, Senior Professional Research Assistant, Coleman Institute. Mr. Gettings' presentation, Achieving Quality and Accountability within a Diverse, Decentralized Service System, features discussion on current issues and trends in our field and exploration of their implications for designing and implementing accountability systems that assure individuals with developmental disabilities reliable access to high quality services and supports that both address their needs and honor their preferences.

Mr. Hemp's presentation, Evolving Systems, will discuss the University of Colorado research project that examines revenue, spending, and programmatic trends in each state's developmental disabilities long-term care system.

This year's conference features tracts for Council members, staff, and executive directors. Sessions include:

An Introduction to the DD Act

DSA's - Roles, Responsibilities and How to Review your DSA
Roles and Responsibilities of Council Members
Memoranda of Understanding for DSA's and Networks
Consumer Member Panel with Commissioner Morrissey
Consumer Satisfaction Framework

Registration for this conference is through the services of DTI Associates, Inc. To register please go to: http://www.dtiassociates.com/naddc

If you would like more information please contact Mary Beth Greene by e-mail at mgreene@acf.hhs.gov

A Perspective on being a Parent of a Child with a Developmental Disability
Louise Merriman, Vice-Chair of the Maine Developmental Disabilities Council, wrote an essay that offers a perspective on life as a parent of a child with a disability. The essay originally appeared in the Portland Press Herald, Portland Maine. By expressing herself in a public forum, this public- and parent-advocate hopefully raised the awareness of people in her community. The essay is a moving look at the negative attitudes that persist in society. It is a reminder that efforts of the DD Network are relevant and important. Her text follows:

You really don't see the deep-seated attitudes towards disability until someone close to you is diagnosed with one. As a public health professional, I have studied disability from an academic standpoint and worked with people with disabilities. But, it was only when my son was diagnosed with mild autism, that I encountered this skewed vision.

The most shocking comment was when I told someone my son had the disease and the response was, "at least, you have another son." I wasn't talking about my son in disparaging terms so I really had to think what this meant. Did this mean that my son with autism didn't count, wasn't entitled to dreams and aspirations, and hopes that my "normal" son had? I was so taken aback that I didn't know what to say, but reply how much I love him and am glad that he is here.

When I look at my son, I really think of how short-sighted it is to label people and just negate what they offer to the world. It is true that my son has difficulty navigating in social situations. He just doesn't understand the cues or puppets them to be a part of the game. He has incredible sensory sensitivities and can't stand to get his socks wet or walk on the floor with bare feet. He can't stand loud sounds. He can't talk as clearly and as verbosely as his little brother. He has tantrums in grocery stores sometimes because there is simply too much to pay attention to. But, it would be an error to say all these "cant's" constitute him.

My son with autism offers a bright vision of the world. Like many children with autism, he is highly visual and wants to see things from all angles. He loves to draw and has infinite patience in studying cars, how they move and what they are made of. He is mesmerized by numbers, the way they add up to form new combinations and how close they are to zero. He notices things that we "normal" people routinize. He points out the silly oddities of our English language that have been simply taken for granted. And he works harder at learning the social games in the world than most people do. As his mother, I will always be his greatest advocate and believe in him. And as a person who has worked so hard to enable himself in an oftentimes disabling world, I will always see him as my hero.

So, I think it is short-sighted to see my son and people with disabilities as broken, as a mistake and as an event to express sorrow for. I don't see my son in any way less than his brother because of his disability. Instead, my son provides all of us with an opportunity to see the world in a different way.

Louise Merriman, MPH
Vice Chair, Maine Developmental Disabilities Council
(c) 2003 Portland Press Herald, Portland Maine, a Blethen Maine Newspaper, article appears by permission.

University Centers for Excellence in Developmental Disabilities Education, Research and Services

The Institute on Human Development and Disability, the UCEDD at the University of Georgia, has been contracted to execute an award given to the Statewide Independent Living Council of Georgia under a Department of Labor grant called "Jobs for All: An Olmstead Employment Initiative." The DOL grant was designed to increase attractive and suitable job opportunities for people with disabilities. The five-year project began in October 2002.

IHDD hopes to achieve success in this program implementing a model of career placement as a coordinated and interpersonal effort. An emphasis will be placed on job opportunities away from enclave programs. The institute will use peer mentoring to assist workers with disabilities coming out of segregated settings. "Employment Brokers" at One-stop centers will assist the worker who has a disability, and their mentor and family members, to implement an employment plan. The model will be put to work in all settings in the State, from urban to rural, though the agencies involved anticipate that the needs of individuals in those areas will vary widely.

IHDD has created partnerships with several organizations that will be involved in this broad and ambitious employment project. Through coordinating efforts IHDD hopes to move nearly 200 people with disabilities who are currently working in segregated settings into carefully selected and appropriate inclusive employment. For information on the project contact Dr. Wendy Parent, IHDD, wparent@uga.edu

For information on the ADD University Centers for Excellence in Developmental Disabilities Program contact Adele Gorelick, agorelick@acf.hhs.gov

Program Performance

Electronic Data System (EDS)

Highlights from FY 2002 Program Perform Reports

Employment

State Council on Developmental Disabilities
National Aggregate:

40 Councils helped 5,616 (a 4% decrease from FY '01) adults with developmental disabilities in gaining employment of their choosing
34 Councils reported that 2,227 businesses/employers (an increase of 23% from FY '01) employed adults with developmental disabilities.

Below is an example of SCDD efforts in employment for people with developmental disabilities:

North Carolina:

"Project E3: Economic Equality through Employment" and the "Changing the Rules" The two projects span from the eastern beaches of North Carolina to the Mountains of Asheville. The micro-enterprise (ME) projects have been successful with increasing awareness, interest and opportunity in the business community, disability community, and provider community for the creation of micro businesses for persons with significant disabilities.

Both projects begin with an applicant process to determine appropriate participants to embark on micro-enterprise ventures. Twelve persons with developmental disabilities are currently building micro-businesses through the two projects. Some businesses created include landscaping services, photography, web research, DJ services, coffee carts, modeling, arts, vending machines, and gadget sales. Each participant has his or her own business circle and also has access to a technical assistance team with marketing, accounting, law and small business professionals. The Division of Vocational Rehabilitation has demonstrated commitment to the projects by participating in business circles with project participants, serving on the two Advisory Boards and by waiving two policies in order to test micro-enterprise viability as an option to earn a livable income for persons with significant disabilities.

The overall success of these projects is seen in the achievement of each goal initiated throughout the past year. Unexpected outcomes included the expressed interest of the Social Security Administration to receive status updates of project and participant achievement, and a waiting list of persons with disabilities who are interested in partnering to develop micro-enterprises. Also unexpected is the response from providers of Adult Day Vocational Program (ADVP) services who want to shift from a traditional readiness model and supported employment to assisting their program participants in development of micro enterprises. Some of these providers however, want actual ownership of the micro-enterprise rather than assisting those they support in owning the business themselves. Technical assistance teams are available only to providers who focus on micro-enterprise ownership for the participant. The most notable barrier is financial support for micro-enterprise start up. The lack of start up funds has hindered objectives set by business circles. Both projects continue to seek funding sources and alternatives for start up processes. Despite funding setbacks, the overall progress of the micro-business programs is encouraging.

State Protection and Advocacy Systems:

38 P&As reported that 662 individuals with developmental disabilities secured or maintained employment due to P&A intervention.

Examples of P&A efforts:

Illinois: Equip for Equality continued to expand its website. Among other things, they added a section on employment rights that includes a fact sheet, a sample accommodation request letter, a sample personnel file request letter, and links to relevant resources. Their web site is located at: www.equipforequality

Maine: DRC provided outreach and training to people who work with people with disabilities and adults with mental retardation about the employment rights of people with disabilities. An attorney in the DRC office presented a training session to workers of the Bureau of Rehabilitation entitled "The Maine Human Rights Act and the Americans with Disabilities Act: What and When Can Employers Ask About Disability?" This material is also available on the Maine DRC web site at http://www.drcme.org/employ/intro.html

Minnesota: MDLC received a sub-contract to collaborate with the Minnesota Work Incentives Connection to deliver 25 workshops statewide on transition planning for students with disabilities. MDLC presented students, parents and teachers with information about how to use special education services for effective work experience and job training; how vocational rehabilitation services can help people with disabilities obtain and keep jobs; new SSI and SSDI work incentives; and the impact of wages on benefits.

Upcoming Events and Announcements

Now Available

Publications

ADD Series Publications
ADD's full series of annual publications for FY2001 are now all in circulation. Over the course of the past year ADD Program offices and active grantees should have received at least one of each of the following:

ADD Program Overview Brochure
ADD Protection and Advocacy 2001 Outcomes and Highlights Booklet
ADD Protection and Advocacy 2001 Service Profile (Statistical)
ADD State Councils on Developmental Disabilities 2001Highlights Booklet
ADD State Councils on Developmental Disabilities 2001 Accomplishments (Statistical)
ADD University Centers for Excellence in Developmental Disabilities Education, Research and Service Highlights (first annual release)

We are beginning work on the FY2002 series.

Reasonable requests for additional copies of all the above publications will be honored while supplies last, electronic copies are also available, please contact Nichole Dulin, ADD, ndulin@acf.hhs.gov

Institute Director Co-Authors Book

Barbara Leroy of the Wayne State University Developmental Disabilities Institute has co-authored a book on successful aging in woman with developmental disabilities. Leroy and her co-author Dr. Patricia Noonan Walsh of University College Dublin gathered information from 200 women over the age of fifty, from more than 15 countries. The book explores common concerns and issues including health, economics, personal security, social roles, and well-being. The book is expected to be released in June of 2004.

Farewell

ADD and the disabilities network will soon be losing a valued friend. On July 11th of this year Adele Gorelick will retire from the Federal Government. Adele came to ADD 11 years ago, previously serving as Commissioner of the Montgomery County (Maryland) Commission on People with Disabilities. Many of you know her as a project officer and ADD coordinator of the University Centers for Excellence in Developmental Disabilities Education, Research, and Service. We will miss her hard work and dedication. We wish her well.

ADDed Resources

The Arc Offers Medicaid Reference Web Site

The Arc of the United States through a cooperative agreement with the ADD has established a web site on Medicaid services. The web site is designed to be used by consumers of Medicaid services, including people who have developmental disabilities.

Advocates and their family members were surveyed regarding what they thought such a reference desk website should include. Responses emphasized the need to be able to understand the complexities of Medicaid in simple, straight-forward language. Since much of the Medicaid program is determined at the State level, Medicaid information can be accessed from individual states. Currently the following States can be accessed at the website: Oregon, California, Oklahoma, Iowa, South Carolina, Maryland, and New Hampshire Four other States can be accessed after February, 2003; they are Montana, Wisconsin, New York, and Colorado.

Organizations participating in the design of the Reference Desk website with the Arc of the United States include: the AIMMM, a program of HalfthePlanet Foundation, the Center on Self-Determination at the Institute on Disability and Development at Oregon Health & Science University, Oklahoma People First, Family Voices, and the ArcLink, Incorporated.