Faculty Profile: John Susa, PHD

John Susa, PHD
Associate Professor of Pediatrics (Research)
Pediatrics
Work: +1 401-444-5540
As part of the Paul V. Sherlock Center on Disability, The Rhode Island Center of Excellence on Disability Education and Research, my interests focus on the long-term effectivness of supports and services to children and adults with developmental disabilities. In particular, I am studying how to better support parents who themselves have cognitive/learning disabilities to parent their children.

Institutions

Rih

Research Description

Rhode Island Family Support 360
Narrative

I. INTRODUCTION AND ABSTRACT

The Sherlock Center is Rhode Island's University Center for Excellence on Developmental Disabilities (UCEDD). Since the Sherlock Center was initially established in 1993, our primary area of emphasis for Rhode Island has been promoting family centered practice and family support. A review of the National Information Reporting System (NIRS) data for the Sherlock Center for 2003-2004 documents that more than 30,000 persons received training or technical assistance from the Sherlock Center. 27% of these were family members. 22% of all Sherlock Center activities focused on family support – only Early Intervention and Education had more activities. 40% of all Sherlock Center employees are family members; thus, the values of family support are deeply engrained into everything we do.

The Sherlock Center has received three "Family Support Projects" since September 2000. As a direct result of the activities of the initial family support projects, we identified two sets of families that are largely underserved. Many of these families receive some supports; but these supports are fragmented, difficult to access, and not directed towards achievable positive outcomes. These two sets of families are the targets for the "Family Support 360" initiatives described in this narrative.

The first set of target families are families who have children with the MOST significant developmental disabilities who are transition aged (13 to 21) who are likely to be eligible for adult services from the Division of Developmental Disabilities (DDD) and the Office of Rehabilitation Services (ORS). Between 35 to 50 of these children turn 21 each year in Rhode Island and apply for services through DDD. The Sherlock Center has supported more than 100 of these families in the past five years. Despite the fact that we have not encountered one family who wants segregated sheltered services for their family member, more than 98% of these individuals (100% of those from the core urban areas) end up in very restrictive settings with minimal community contact. The families cite several barriers, ranging from not knowing what services and supports are available to difficulties in determining eligibility to not enough service providers. This application proposes to establish a One Stop Transition Center that targets these families. 54% of these families reside in the core urban areas of Providence, Pawtucket, Central Falls, and Woonsocket. This One Stop Transition Center will be housed in Providence (which is a designated Empowerment Zone) and will be a collaborative effort of the Sherlock Center, the Rhode Island Department of Education (RIDE), DDD, ORS, and several local school districts.

The second set of target families is families in which parents themselves have disabilities. Rhode Island Department of Health data documents that there are 34 women (10 year average, with a range between 21 and 52) with significant disabilities who gave birth each year. Very few of these mothers are in the DD service system – a survey of DD caseworkers documents that there are less than 60 parents supported through the DD system. Many of these parents are enrolled in the state TANF program. Others (who still have custody of their children) are struggling primarily as single parents. Most of the children have been removed into state custody. Those children remaining with their parents are typically enrolled in special education programs in their schools. Despite the obvious need for additional support, there is little formal support other than the time limited court mandated support that is part of the termination of parental rights process. This component will be housed in Providence and will be a collaborative effort of the Sherlock Center; RI Department for Children, Youth, Families; the Community Adolescent Service System Program (CASSP; RI Neighborhood Health Plan, and others.

II. NEED FOR ASSISTANCE
The Rhode Island Family Support 360 Planning Grant was funded in October 2003. A Steering Committee/Work Group was established for each target population. Each Work Group consisted of state agencies representatives, provider organizations, targeted family members, and others. The two Work Groups implemented a number of planning activities and conducted indepth interviews and strength based assessments with more than 45 families; thus, actually beginning the one stop process. The Need for Assistance section will discuss the information gathered by the Work Groups on each of the target populations. The Approach section will discuss the operational practices and processes (that have already been piloted) that are pertinent to each of the target populations.

A. Families in which the Parents have Cognitive Challenges - Needs and Relevant Data Based on Research and/or Planning Studies

The Work Group for this component of the Planning Project included:
  • Two groups of target families who met to offer suggestions

  • Casework Supervisor, RI Dept for Children, Youth, Families

  • Casework Supervisor, RI Division of Developmental Disabilities

  • Directors and/or Caseworkers from six community family support agencies

  • Representatives from the Local Coordinating Councils of five CASSPs

  • Associate Director, RI Disability Law Center (P&A)

  • Director, Sherlock Center

  • Project Staff, Sherlock Center

Three activities occurred during the planning year that provided information pertinent to this population. First, project staff conducted both a written survey and an interview with every state agency and private organization that possibly supported these families. These provided us with information about demographics and about need. Second, we sponsored a statewide conference on Families in which the Parents have Cognitive Challenges. More than 120 people participated, including state and private agency staff and some parents. This provided input into "how the system of supports should be structured". Third, we piloted both the process and several assessment and planning tools with 19 parents. The information in the Needs, Results and Benefits, and Approach sections of this narrative are the direct result of these activities.

During the last year as part of the FS 360 Planning grant, 19 parents (17 mothers and 2 fathers) have been interviewed to assess their self-identified needs. These parents represent seventeen families headed by 15 single mothers and 2 couples, both with cognitive challenges.

In general, families described a stress-filled life of poverty, isolation and uncertainty. The most common sources of income were social security and/or TANF benefits. Only 3 parents were working (1FT and 2PT). Twelve of the seventeen lived in municipal housing complexes, the others lived in Section 8 dispersed housing. Most were still taking care of young children. Although they were surviving, none of the families reported that the amount of assistance was sufficient.

On a positive note, all had healthcare provided to their children and them through a combination of Rite Care or fee for service Medicaid.

Many of their children (19/28) carry some type of disability label and are enrolled in either early intervention or special education programs. Their other young children are in Head Start Programs. Childcare outside of that provided through the above programs is not available to most families.

All parents report being special education students. Only three completed high school. All recognize that they need to continue their education. Half of them are currently in GED programs through some kind of community agency, usually Head Start. A high priority is learning to read so that they can be more functional and take care of their affairs better. Most who have children in school have great difficulty helping them to do homework.

About half have some family contacts who occasionally watch their children. The other half is estranged from family and neighbors. Neither group has many friends or people in their community they can turn to, outside of professional support providers.

Most parents reported difficulty in making and keeping healthy relationships with families, friends or neighbors. They were suspicious of "professionals" and worried about the fate of information they collected. Most families lived in subsidized municipal housing complexes, where they and/or their children often ended up in conflict with neighbors and their children.

Only those three families in which one parent was working have a car. The rest depend on public transportation and thus have some limits on where they can go. Most families have access to reduced fare or free access to public transit. They report that it often does not go where they want to go. With little money, they find themselves going to few places other than to medical and social service appointments.

Questions for parents and their answers:

The responses summarized below, describe the areas of need and areas where they believe they could use additional support.

Do you need help with? No, Yes

Planning for the future 5, 14
Making your plans happen 3, 16
Making and keeping appointments 3, 16
Making important decisions about money 4, 15
Managing your children 2, 17
Spending time with family, friends and neighbors 7, 12
Reading and understanding your mail 4, 15
Understanding the services offered to me 2, 17
Dealing with school problems 0, 19
Finding a descent place to live 7, 12

Would you like? No, Yes

Information in one place 0, 19
Inclusion in community social activities 4, 15
Help from Family, Friends, and Neighbors 1, 18
Training in parenting 1, 17
More education 6, 13
A job or a better job 9, 10
Support group to help with self-advocacy skills 6, 13
Flexible in-home support 7, 12
A support group where parents and children play and learn together 5, 14
Less people to deal with when I have a problem 3, 16
Someone I trust to explain things to me 1, 18

Analysis of State/Federal Laws Pertinent to Parents with Cognitive Challenges

Due to questions regarding their ability to care for their children, parents with cognitive disabilities often become involved in the state child welfare system. Once involved in this system, they are subject to a time-limited process for remediation, governed by a state law. To a great extent, state law reflects federal child welfare law and funding policy. In most cases, the state child welfare agency will be responsible for making "reasonable efforts" to preserve or reunite the parents with their child. The state fulfills this responsibility by offering services – typically some form of training in parenting skills to remediate the alleged parental deficiencies. Once the child has been in the legal custody of the state for twelve months, the state child welfare agency is authorized to file a petition for terminating parental rights, if "there is not a substantial probability that the child will be able to return safely to the parents' care within a reasonable period of time." Thus the period of remediation often ends twelve months after removal of the child from the parents' home, or other change in legal custody of the child.

Parents with cognitive disabilities face additional barriers when they attempt to demonstrate their parenting ability. These include (1) biased attitudes towards parents with cognitive disabilities, and (2) lack of appropriate parenting services geared towards these parents' cognitive abilities.

Bias towards parents with cognitive disabilities was reflected in Rhode Island's child welfare law up until 2000. At that time, antiquated and discriminatory language that allowed for the termination of parental rights solely on the basis of a diagnosis of "mental deficiency," was finally removed from the statute. While this facially discriminatory language has been deleted, the state still faces challenges in ensuring that its practices do not in effect discriminate against parents with cognitive disabilities. There are currently very few providers who have the skills and experience to provide parenting services to persons with cognitive disabilities. Because of this lack of sufficient services, it often takes several months after the state has taken custody of a child, to arrange parenting services for a parent with a cognitive disability. While services are being arranged, the twelve-month statutory period for parental improvement keeps running. Even when appropriate parenting services are put in place, the state child welfare agency (by report) often does not authorize the amount of services necessary to provide effective parenting support. Thus, parenting supports are critical.

B. Families who have children with significant developmental disabilities who are transition aged – Needs and Relevant Data Based on Research and/or Planning Studies

The Work Group for this component of the Planning Project included:
  • Four target families

  • Director, RI Dept of Education, Office of Special Populations

  • Transition Coordinator, RI Dept of Education

  • Director, RI Division of Developmental Disabilities

  • Casework Supervisor, RI Division of Developmental Disabilities

  • Caseworker assigned to targeted project families

  • Associate Director, RI Office of Rehabilitation Services

  • Special Education Administrators from Providence and
    two other core urban school districts

  • Director, Sherlock Center

  • Project Staff, Sherlock Center

The Work Group developed a set of outcomes for families, for students, and for the system and an "Ideal Process" which was refined through family interviews and pilots. This process (described in the Approach section) included (a) the Family Support 360 Intake Form; (b) the Family Support 360 Student Outcomes Survey; and (c) the Family Support 360 Strength Based Assessment of Family Resources and Needs. These tools were piloted with 26 families through extensive interviews and planning sessions. The following four pieces of information were gathered from these tools and other sources. They document the issues and needs pertinent to this first target population of families.

First, an analysis of Department of Education census data describes the demographic parameters of the target population (in the following table):

Census Year 2000, 2001, 2002, 2003
Children with Mental Retardation 1187, 1255, 1242, 1247
Children with Multiple Disabilities 316, 313, 306, 315
Children with Significant Physical Disabilities 163, 145, 147, 146
Total 1663, 1713, 1695, 1708

Number who are 16 to 21: 283, 293, 289, 291

Number of Children with MR in Urban Core Districts
(Providence, Pawtucket, Central Falls, Woonsocket): 583, 665, 671, 675

Percentage in Urban Core: 49%, 53%, 54%, 54%

These census data indicate the population of students who are likely to be eligible for supports through DDD is stable. Half of these students (and their families) reside in the urban core. 40% of the children in the urban core are members of minority races and/or cultures (in comparison with 5% for the rest of the state).

Second, a summary of the findings from the pilot of Family Support 360 Strength Based Assessment of Family Resources and Needs indicates the following:

(1) Percent of Families who reporting needing information about:
  • DDD Intake Process 96%

  • ORS Intake Process 93%

  • Adult Service Providers 93%

  • Self Directed Adult Options 88%

  • Transition Planning 75%

  • Creating a Positive Vision 75%

  • Guardianship 70%

  • Housing Options 55%

(2) Services and supports most frequently cited as needs by families:
  • Vocational Evaluation for Family Member 85%

  • Connecting to the Community 70%

  • Extended Respite Care 62%

  • Connecting to Other Families in Transition 54%

  • Adequate Transportation 54%

  • Effective Communication Systems 50%

  • Assistive Technology 40%

  • Adequate Income for Family 20%

  • Employment for a Family Member 20%

(3) Families raised the following significant issues:
  • Family Stress

  • Mixed and/or contradictory messages from staff regarding eligibility

  • Continued confusion over {official) appropriate age to apply to DDD

  • Lack of vocational experiences

  • Limited capacity to plan effectively with families when language is not English

  • Limited capacity to adequately serve medically complex individuals

  • Limited capacity for community-based service in some regions of the state

  • Limited to nonexistent access to expertise in AT or AAC

Third, an analysis of outcomes achieved by individuals supported by DDD indicates the need to focus transition planning. A comprehensive study of DDD was completed by Dr. James Conroy. Interviews and other analyses of a representative sample of 331 individuals were completed. 6.3% of the sample owned their own home; 34.7% lived with a parent or a relative; 35.4% lived in a supported community residence; 2% lived in nursing homes or sheltered care facilities. The most common form of community residence is the 6 person group home. Only 14.5% of the homes were chosen directly by the person. Similarly, 57.9% had little or no input in the choice of who they lived with.

In the employment arena, the Conroy study reported that only 7% had competitive regular employment and 14% had supported employment. 36% were in sheltered workshops and 48% were in non vocational day programs. In 1999, the Center for Outcome Analysis reported that Rhode Island lags behind the national average in supported employment. Similarly, the latest State of the States in Developmental Disabilities (Braddock et al) lists Rhode Island in the bottom third of the states in supported and competitive employment.

In the arena of community membership, the Conroy study reported that 62% of individuals spent none or little of their day in the presence of coworkers or peers who do not have disabilities.

These data support the need for comprehensive transition planning that results in more community based and career based experiences that will increase positive outcomes.

Fourth, a recent Sherlock Center study about how families obtain information and family preferences for information indicated the following: 94% of families with children, 100% of families with adult members, and 85% of adults with disabilities listed receiving information through personal contact with other families as their overwhelming preference. All three groups described information received from other families as more useful to them than information received from agencies. All three groups also reported great difficulties in obtaining needed information from state agencies. Thus, a family centered approach, led by parents is the preferred mode for providing information and family support.

C. Goals and Objectives

Based on the needs described above, there are three primary goals for this project:

Goal 1 – To establish the Rhode Island Family Support Center (RIFS360) at the Sherlock Center on Disabilities at Rhode Island College. Through that Center, to support between 50 – 60 families during the first year of the Center, and additional 50-60 families during each subsequent year.
Goal 2 – To provide wrap around Family Support to 25-30 families each year in which the Parents have Cognitive Challenges.
Goal 3 – To provide wrap around Family Support to 25-30 families that include a family member with very severe disabilities between the ages of 13-21.

Goal 2 – Annual Objectives:
Year 1
  1. To implement RIFS360 procedures in the Child Adolescent Service System Program (CASSP) in four core urban areas – Providence, Pawtucket, Central Falls, Woonsocket.

  2. To support at least 25 to 30 families during Year 1.

  3. To provide initial training and ongoing technical assistance to the Family Support Coordinators, Mentor Families, and others.

  4. To disseminate through personal contact, mail, and the world wide web information about the mission of the RIFS360. To develop a web page for the RIFS360.

  5. To provide families with the following supports:
    · CASSP
    · CEDARR Family Centers
    · Educational Advocacy
    · Child Care and/or Respite Services
    · Developing Effective Parenting
    · Supported Parenting Networks
    · Connection to the Providence Plan (Empowerment Zone)
  6. To review and refine record keeping and data collection procedures.

Year 2
  1. To implement RIFS360 procedures in two additional CASSPs in the ring cities –
    Cranston, Warwick, East Providence, West Warwick.

  2. To add the following family supports:
    · Employment Supports
    · Adult Literacy Supports
    · Transportation Supports
    · Other Family Supports (described in section A7)
  3. To support an additional 25 to 30 families.

Year 3
  1. To implement RIFS360 procedures in the two remaining CASSPs.

  2. To add the following family supports:
    · Housing Supports
    · Assistive Technology
    · Division of Developmental Disabilities Supports

  3. To support an additional 25 to 30 families.

Years 4-5
  1. To support an additional 25 to 30 families each year.

  2. To finalize arrangements with all project partners that will sustain project after pilot funding ends.

Goal 3 – Annual Objectives:
Year 1
  1. To implement RIFS360 procedures in the four core urban areas – Providence, Pawtucket, Central Falls, Woonsocket.

  2. To support at least 25 to 30 families during Year 1.

  3. To provide initial training and ongoing technical assistance to the Family Support Coordinators, Mentor Families, and others.

  4. To disseminate information about the mission of the RIFS360 to all Rhode Island school districts. To develop a web page for the RIFS360.

  5. To provide families with the following supports:
    · Quality Transition Planning
    · Vocational Evaluation for Family Member
    · Career and Community Experiences for Family Member
    · Access to DDD and ORS
    · Child Care and/or Respite Services
    · Person/Family Interdependent Plan
    · Supported Parenting Networks
    · Information about the issues identified in the Needs section

  6. To review and refine record keeping and data collection procedures.

Year 2
  1. To implement RIFS360 procedures in the ring cities –
    Cranston, Warwick, East Providence, West Warwick.

  2. To add the following family supports:
    · Employment Supports for Parents
    · Developing Augmentative Communication Systems for Family Member
    · Assistive Technology
    · Transportation Supports for Family
    · Other Family Supports (described in section A7)

  3. To support an additional 25 to 30 families.

Year 3
  1. To implement RIFS360 procedures in the suburban school districts.

  2. To add the following family supports:
    · Housing Supports
    · Connection to the Providence Plan.

  3. To support an additional 25 to 30 families.

Years 4-5
  1. To implement the RIFS360 procedures in the rural school districts.

  2. To support an additional 25 to 30 families each year.

  3. To finalize arrangements with all project partners that will sustain project after pilot funding ends.

D. Location of the Project

As is explained in the Approach section of the narrative, the staff for the "Rhode Island Family Support Center" (RIFS360) will be housed in space provided at the Sherlock Center. The Sherlock Center will provide space for Family Support Coordinators and Mentor Families to meet with target families and access to all the information resources described in the narrative. However, most of the actual work of this will occur in the local Child and Adolescent Service System Program (CASSP), local school districts, family homes, and the community.

The RIFS360 Center will be located in Providence in a building on the Rhode Island College campus. Rhode Island College is located in the Providence Empowerment Zone. It is 8 miles from Pawtucket, 7 miles from Central Falls, 12 miles from Woonsocket – the other core cities. There is public transportation from all regions of these cities to the location of the RIFS360 Center. This is Rhode Island – the most distant parts of the state are 40 miles away. Thus, the RIFS360 Center is easily accessible to all of Rhode Island.

III. RESULTS AND BENEFITS

A. Families in which the Parents have Cognitive Challenges


The benefits expected from this component of the Rhode Island Family Support 360 Project include:

Outcomes for Families:
  • Parental competence increased as the result of specific parent training and mentoring

  • Parents are empowered to fulfill parental role

  • Parents are actively involved in making plans for their family and taking action to seek out help in reaching goals

  • Family has more interaction and contact with the community and its members

  • Parents have better voluntary help seeking skills

  • Parents have the opportunity to explore parental roles and chose to continue or end that experience

  • Family income is increased through employment

  • Expanded number and kinds of options that will allow parents to participate successfully

Outcomes for Children:
  • Healthier children receiving more preventative healthcare services and reduced hospitalizations

  • Children succeeding in school

  • Children more engaged in community based leisure and recreation opportunities

  • Children have more supportive contact with safe and caring adults in their community

Outcomes for the System:
  • Coordination of children's and adults' services

  • Because support for the child is driven by family preservation concerns, there will reduction in out of home placement of children

  • Focus on support to parents and reduced tendency to stress professional interventions

  • Better continuity of support

B. Families who have children with significant developmental disabilities who are transition aged

The benefits expected from this component of the Rhode Island Family Support 360 Project include:

Outcomes for Families - Families will:
  • Have adequate housing

  • Have adequate income

  • Have adequate transportation

  • Understand transition process

  • Understand guardianship

  • Have an enhanced vision for their family member

  • Have ability to advocate and generate opportunities

  • Have knowledge of resources

  • Have knowledge of effective strategies to use resources

  • Will receive needed supports

  • Will have a network of friends and advisors

  • Will have access to interpreter services and other cultural/linguistic support

Outcomes for Students/Adults – Students/Adults will:
  • Develop competencies

  • Be healthy

  • Have decreased challenges

  • Have effective communication

  • Be employed in meaningful daily activity

  • Make decisions about life activities

  • Have a variety of relationships

  • Have a variety of experiences

  • Have increased quality of life

Outcomes for "the System":
  • All school districts will know about DDD and ORS services

  • ORS Counselors will be assigned to schools

  • Will work towards a common process for applying for service

  • Will support meaningful, situational vocational evaluations

  • Will create training and employment opportunities

  • Will participate fully in transition planning

  • Will develop and support a sufficient number of adult service providers in all parts of RI


IV. APPROACH
This section is not available for viewing here. To receive a complete copy of the Rhode Island Family Support 360 Narrative, please contact John Susa.

Grants and Awards

COMMUNITY SERVICE and LEADERSHIP (past 30 years)

Commissioner-Chairman, State of RI Commission for Human Rights
Co-founder of the Warwick Shelter for Families who are Homeless
President of the Rhode Island Association for Retarded Citizens [RI Arc]
Chair of the RI Developmental Disabilities Council [RIDDC]
Bishop of the Providence Ward of the Church of Jesus Christ of Latter-day Saints
President of Personal Lifetime Advocacy Networks of RI [PLAN RI]
Incorporator of The RI Parent Information Network [RIPIN]
Chair of the RI Coalition to Support Parents with Cognitive Challenges
Chair of the RIDDC Parent Empowerment Committee
Chair of the RIDDC Community Integration Committee
Chair of the RI Arc Least Restrictive Environment Committee
Chair of the Kent County Child and Adolescent Service System Project [CASSP]
First Counselor of the Warwick Ward of the Church of Jesus Christ of Latter-day Saints
Co-chair of the RI Children's Mental Health Advisory Council
Co-chair of the RI Children's Behavioral Health Advocacy Council
Scoutmaster Warwick Troop 4, Boy Scouts of America
President of the Toll Gate High School PTSA
Vice-chair of the House of Delegates of the Easter Seal Society of RI
Providence RI Stake of the Church of Jesus Christ of Latter-day Saints High Council
Member of the RI Developmental Disabilities Council
Board of Directors and Executive Committee of RI Arc
Beyond the Ladd Center Task Force
Member of the Rhode Island Department of Education LRE Advisory Panel
Family Advisory Council of Camp Dartmouth-Hitchcock
Executive Committee of the RI UAP Grant Project
New Pride School Advisory Committee
Toll Gate High School Improvement Team
Board of Directors of Wheels and Heels of Rhode Island
RI Commission to Study Early Intervention
Council on Community Advocacy, Association of University Centers on Disability

Affiliations

COMMUNITY SERVICE and LEADERSHIP (past 30 years)

Commissioner-Chairman, State of RI Commission for Human Rights
Co-founder of the Warwick Shelter for Families who are Homeless
President of the Rhode Island Association for Retarded Citizens [RI Arc]
Chair of the RI Developmental Disabilities Council [RIDDC]
Bishop of the Providence Ward of the Church of Jesus Christ of Latter-day Saints
President of Personal Lifetime Advocacy Networks of RI [PLAN RI]
Incorporator of The RI Parent Information Network [RIPIN]
Chair of the RI Coalition to Support Parents with Cognitive Challenges
Chair of the RIDDC Parent Empowerment Committee
Chair of the RIDDC Community Integration Committee
Chair of the RI Arc Least Restrictive Environment Committee
Chair of the Kent County Child and Adolescent Service System Project [CASSP]
First Counselor of the Warwick Ward of the Church of Jesus Christ of Latter-day Saints
Co-chair of the RI Children's Mental Health Advisory Council
Co-chair of the RI Children's Behavioral Health Advocacy Council
Scoutmaster Warwick Troop 4, Boy Scouts of America
President of the Toll Gate High School PTSA
Vice-chair of the House of Delegates of the Easter Seal Society of RI
Providence RI Stake of the Church of Jesus Christ of Latter-day Saints High Council
Member of the RI Developmental Disabilities Council
Board of Directors and Executive Committee of RI Arc
Beyond the Ladd Center Task Force
Member of the Rhode Island Department of Education LRE Advisory Panel
Family Advisory Council of Camp Dartmouth-Hitchcock
Executive Committee of the RI UAP Grant Project
New Pride School Advisory Committee
Toll Gate High School Improvement Team
Board of Directors of Wheels and Heels of Rhode Island
RI Commission to Study Early Intervention
Council on Community Advocacy, Association of University Centers on Disability


ACADEMIC APPOINTMENTS

Instructor of Pediatrics (Research)
Brown University
Providence, Rhode Island 1975-1976

Assistant Professor of Pediatrics (Research)
Brown University 1976-1985

Associate Professor of Pediatrics (Research)
Brown University 1985-

Coordinator of Individual and Family Support;
The Paul V. Sherlock Center on Disabilities of Rhode Island 1993-


HOSPITAL APPOINTMENTS

Director
Pediatric Metabolic Research Laboratory
Rhode Island Hospital
Providence, Rhode Island l975-1998

Family Support Coordinator
Child Development Center
RIH/Hasbro Children's Hospital
Providence, Rhode Island 1998-2002

Family Support Coordinator
CEDARR Center
Hasbro Coordinated Services 2002-present


OTHER APPOINTMENTS

Affiliated Scientist, New England Regional Primate
Research Center, Southborough, MA l976-2000

Consultant for Clinical Trial of Glycospec
Assay for Abbott Laboratories l979-l980

Member of NIH Task Force on Animals
Appropriate for Studying Diabetes
Mellitus and Its Complications l98l

Invited Participant to the NIH National
Diabetes Data Group International Workshop
on Glycosylated Proteins and Diabetes l983


HOSPITAL COMMITTEES

Radiation Safety Committee 1978-2000
Lifespan Animal Care and Use Committee (Chair) 1981-present
Safety Training Committee 1997-2003
Lifespan Youth Initiatives Council 1997-1999
CEDARR Family Center Work Group 2000


UNIVERSITY COMMITTEES

Brown University Institutional Animal Care
and Use Committee (IACUC) 1989-present


MEMBERSHIPS IN PROFESSIONAL SOCIETIES

American Association for the Advancement of Science
American Association for Laboratory Animal Science
American Association on Mental Retardation
American Chemical Society
American Diabetes Association
American Society of Primatologists
Association for Persons with Severe Handicaps
Perinatal Research Society
Sigma Xi
Society for Experimental Biology and Medicine
Society for Pediatric Research

Funded Research

Administration on Developmental Disabilities, US Department of Health and Human Services: University Center of Excellence in Disability Education and Research Core ($500,000) and Family Support ($200,000). Grants to the Paul V. Sherlock Center at RI College.