ARCH Fact Sheets

Fact Sheets are available from ARCH at no charge. Click on the link associated with each and you can print them from the web page or as a pdf file.  For best document viewing in Calameo, if available, view in full screen mode.

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1. Adults, Aging, Grandparent Families 45, 54, 55, 57
3. Children with Special Needs 2, 4, 5, 9, 11, 23, 34, 47, 49
4. Adults and Children with Autism and Intellectual and Developmental Disabilities 58, 62
5. Individuals with Mental Health Issues 34, 57
6. Individuals with Neurological Conditions  55, 59
6. Children, Adolescents, Aging at risk of abuse and/or neglect 36, 39, 61
7. Crisis Nurseries and Emergency Respite 1,3, 20, 26, 61
8. Cultural Competency 50
9. Evaluation 12, 13, 14, 15, 28,  56 
10. Family Support Services 22, 37 
11. Foster, Adoptive Families 32, 33
12. Funding, Marketing, Planning 6, 7, 8, 10
13. Grief 21, 40
14. Program Administration 24, 25, 27, 42, 43 
15. Recruiting, Training & Retaining Providers 18, 44
16. Risk Management 16, 17 
17. Volunteer Respite 16, 18, 53
18. Special Topics 35, 38, 41, 53, 60
19. Veterans Respite 63

Brief Descriptions

1. Crisis Nursery Care: Respite for Children at Risk of Abuse and/or Neglect
Definition of crisis nursery services, information about six program models, and listing of resources and references for further information.
[FS_1] [Printable pdf_button]

2. Respite for Children withDisabilities, & Chronic or Terminal Illness
Definition of respite, information about seven program models, and listing of resources and references for further information.
[FS_2][Printable pdf_button]

3. Crisis Nursery Care for Infants and Children Who Are Medically Fragile
Facts and issues around staffing, training, and medical services for crisis nursery care for infants and children who are medically fragile written by Jeanne Landdeck-Sisco, Executive Director, Casa de los Niños.
[FS_3][Printable pdf_button]

4. Respite Care for Children with Developmental and/or Physical Disabilities: A Parent's Perspective
Parent's perspective on keys to a successful repite program, written by Scott Miller, FSC Coordinator for West Virginia, and parent of a child with Down's Syndrome.

5. Respite Care for Children with HIV-Related Conditions
Program considerations such as training, provider support and supervision, use of volunteers, and medical services, written by Jane Weiler, Director, Pediatric AIDS Respite Program, New York Hospital Cornell Medical Center.

6. Some General Principles of Charitable Nonprofit Fundraising
Examination of funding basics and the role of boards; long range and strategic market plans; different funding strategies; and funding goals. Written by Beverly R. Hoffman, President, National Deferred Giving Trust.

7. Marketing for Charitable Nonprofit Organizations
Discussion of how marketing principles apply to nonprofit organizations. Emphasis that effective marketing helps in the competitive search for funding sources. Written by Beverly R. Hoffman, President, National Deferred Giving Trust.

8. How Fundraising Flows From Strategic Planning
Explanation of the interrelationship between strategic planning, marketing, and fundraising. Includes a step-by-step strategic planning process. Written by Beverly R. Hoffman, President, National Deferred Giving Trust.

9. Respite Care for Children with Autism
This fact sheet has been revised and includes the most current information on children and adults with autism -- see
Fact Sheet 58: Respite for Individuals with Autism.

10. Creative Fundraising Activities
Seventeen creative fundraising activities described with estimates of planning time, cost, and personnel required.

Completely Revised 11. Respite for Families Caring for Children Who Are Medically Fragile
Medically complex or medically fragile infants and children have numerous medical
needs resulting from multiple chronic conditions, technology dependence, and/or complex medication treatments. This fact sheet is intended to provide a basic overview of useful information for respite providers who work with individuals and families with children who are medically fragile. It is also meant to assist Lifespan Respite grantees and their collaborators by increasing their understanding of the unique needs of this population and their family caregivers.
[FS_11 Printable pdf button]  

12. Local Program Evaluation
The basics of program, not outcome, evaluation. Provides step-by-step process including how to determine the scope of the evaluation, select appropriate evaluation methods, collect and analyze information, and report findings. Written by David B. Langmeyer, evaluation consultant and Gail S. Huntington, former ARCH Director of Research/Evaluation.

13. Developing Evaluation Questions
Explanation of how to develop process, structural, activity, and outcome questions for effective evaluation of a program. Written by David B. Langmeyer, evaluation consultant and Gail S. Huntington, former ARCH Director of Research/Evaluation.

14. Evaluation Measures
Explanation of the importance of carefully selecting measures for evaluation questions. Covers the question of how activities will be measured, who will complete the measure, selecting the measure, and ensuring confidentiality. Written by David B. Langmeyer, evaluation consultant and Gail S. Huntington, former ARCH Director of Research/Evaluation.

15. Developing the Evaluation Report
Discussion of how to most effectively present evaluation data in written and verbal reports. Includes information about developing charts and graphs for visual presentation of numerical data. Written by David B. Langmeyer, evaluation consultant and Gail S. Huntington, former ARCH Director of Research/Evaluation.

16. Volunteers
Discussion of the issues pertaining to workers' compensation, personal liability, and vehicle liability for organizations employing volunteers. Excerpted from Lai, M., Chapman, T., & Steinbeck, E. (1992). Am I Covered for...? A Comprehensive Guide to Insuring Your Nonprofit Organization (2nd ed.).

17. Risk Management
Details the liability risk to programs and provides five steps for managing those risks. Points out the value of sound agency structure as a risk management tool, the need for a risk management policy statement, and ways to address parental concerns and confidentiality. Written by Becky Montgomery, planner, consultant, and trainer in child abuse and neglect issues.
[FS_17][Printable pdf_button]

Completely Revised 18. Volunteer Respite: Valuable Resources
How-to's of screening, selecting, placing, and training volunteers. Outlines various ways that volunteers can be utilized and provides tips for retaining volunteers over time. Highlights national and local volunteer respite programs. Written by Kelly Tipler, consultant and Chair, TN Respite Coalition.
[FS_18 Printable PDFpdf button]

20. Crisis Nursery Services: Responding to Parental Concerns
Discussion of parental concerns and how programs can respond effectively to those concerns, thus building trust between the organization and parents. Written by Becky Montgomery, planner, consultant, and trainer in child abuse and neglect issues; Nancy Smith, ARCH Associate Director; and Belinda Hardin, former ARCH Director.

21. Families and the Grief Process
Examination of grief and the emotions associated with it. Offers healing strategies for families and staff working with them. Written by Kathleen Braza, bereavement consultant. [FS_21][Printable pdf_button]

22. Family Support Services
Definition of family support, description of typical components of family support programs, in general, and specific to crisis nursery and respite programs. Written by Paul Deane, Director of Information Services, National Resource Center for Family Support Programs.

23. Siblings of Children with Special Health and Developmental Needs
Discussion of the typical concerns of sisters and brothers and how to create programs that address their specific needs. Provides a checklist for organizations to assess their inclusion of sisters and brothers. Written by Donald Meyer, Director, Sibling Support Project.
[FS_23] [Printable pdf_button]

24. Advisory Boards and Boards of Directors
Distinguishes between the roles and responsibilities of advisory boards and boards of directors. Offers tips on the recruitment, training, and retention of board members. Written by Sue McKinney-Cull, ARCH Regional Coordinator and Nancy Smith, Associate Director of ARCH.
[FS_24][Printable pdf_button]

25. Helping Each Other Help Others: Principles and Practices of Collaboration
Definition of collaboration and other shared resource efforts. Discusses the characteristics of effective collaborative efforts. Written by Arthur T. Himmelman, consultant.

26. Crisis Nursery Services: Responding to Ongoing Family Crises
Discussion of the need for planned crisis nursery services to assist families with chronic or ongoing crises. Points out programmatic and staffing considerations for such service as well as the need to build a relationship with child protective services. Written by Jeanne Landdeck-Sisco, Executive Director, Casa de los Niños.

27. Sticky Figures: Using a Needs Assessment
A thorough examination of the process of developing, implementing, and documenting a needs assessment. Various data collecting methods are examined in detail. Written by David B. Langmeyer, evaluation consultant.
[FS_27][Printable pdf_button]

32. Respite for Foster Parents
Discusses value of respite services for maintaining and enhancing foster family placements. Offers unique program considerations, foster parent concerns, and tips for respite provider recruitment, screening, training, and retention. Written by Marilyn Barney, Director, Project HARP, Judy Levin, Program Supervisor for Family Support Services of the Bay Area, and Nancy Smith, Associate Director of ARCH.

33. Respite as a Support Service for Adoptive Families
Highlights eight core issues affecting all adoptive families. Presents information to help respite programs address the unique needs of children who are adopted, their adoptive families, and respite workers serving this population. Written by Brenda Goldsmith, Director of Adopt-A-Rest at La Hacienda Foster Care Resource Center.

Completely Revised 34. Respite for Caregivers of Children with Serious Emotional Disturbance
Finding respite services for a child with challenging behavioral issues can be difficult for families. This fact sheet discusses the definition and characteristics of emotional disturbance, issues for families, program considerations including the referral process, the matching of respite providers and families, training, and evaluation, as well as the need for state involvement in program planning. Written by Susan Dougherty, ARCH Consultant and reviewed by Louise Barnes, Ph.D., Mental Health Program Planner, Office of Children and Youth, Division of Mental Health Services, TN Department of Mental Health and Substance Abuse Services, and Terry Butler, Inclusive Child Care Program, Oregon Council on Developmental Disabilities.
[FS_34 Printable PDF pdf button] 

Completely Revised 35. Respite for Rural Family Caregivers: Overcoming the Challenges
Family caregivers living in rural and frontier areas face unique challenges to accessing supports, including respite, regardless of the age or condition of the care recipient. Family caregiving can be stressful, but when faced with fewer job opportunities and financial resources, limited access to health and social services, transportation barriers and the geographic isolation that predominate in many rural areas, family caregivers may experience added stressors. The purpose of this fact sheet is to present a clear picture of care recipients and their caregivers who live in rural and frontier areas and to offer suggestions to assist family caregivers, respite providers and administrators, and Lifespan Respite grantees in finding or developing respite resources.
[FS_35 Printable pdf pdf button]

36. Abuse and Neglect of Children with Disabilities
Over 10,000 copies of this factsheet have been distributed nationally. Nationally known author, Nora Baladerian, makes clear the interrelationship between child abuse and neglect and disabilities. Pointing out that not only are children with disabilities at high risk for abuse and neglect, but that children can become disabled through abuse and neglect. She looks at methods of prevention and challenges to effective intervention, and makes strong recommendations for anyone working in the field with children.

38. Providing Respite at Conferences for Children with Special Needs
More and more conference planners are understanding the value of offering respite services to families attending their conferences. Written by Susan Bridges Robertson, who has direct experience in offering respite at a large national conference, this comprehensive factsheet covers logistical concerns, liability issues, staffing questions, meals, registration basics, budget issues, and evaluation.

39. Respite Services for Families with Adolescents at Risk of Abuse or Neglect
An often forgotten population in the field of respite, teens and their families in crisis can greatly benefit from temporary relief. Program design, services for parents, and services for adolescents are discussed. Written by Jill Edwards-Sutton, Child and Family Services Director with Mid-Michigan Community Action Agency.
[FS_39]   [Printable pdf_button]

40. Caregivers Grieve, Too!
Respite providers can experience all levels of grief when working with families under extreme stress. Bereavement Consultant, Kathleen Braza, discusses how to recognize grief, what to do with "unfinished business," rituals that can help when someone dies, and healing strategies for everyone working in this field.

41. Soothing Those Jangled Nerves: Stress Management
Discussion of the impact of stress on individuals, the symptoms of stress, myths about stress, and strategies for living with stress. Written by Nita Norphlet Thompson, Coordinator for the Head Start Region IV Resource Access Project, and Sue McKinney-Cull, Product Development Specialist for ARCH.

42. Preventing the Spread of Disease: Tips for Providers
A thorough discussion of universal health precautions from the perspective of those providing direct care to children. Specific strategies are addressed for preventing the spread of infectious disease, including HIV/ AIDS. Written by Maggie Edgar, ARCH Regional Coordinator.

43. Protecting Staff and Children from the Spread of Disease: A Guide for Program Directors and Managers
This fact sheet provides program administrators with information and guidance related to the spread of infectious diseases in programs serving children. Issues relating to training, universal precautions, and confidentiality are covered. Specific strategies are addressed for preventing the spread of infectious disease, including HIV/AIDS. Written by Maggie Edgar, ARCH Regional Coordinator.

44. Recruiting and Retaining Respite Providers
Finding and keeping care providers is a challenge for all respite programs. This concise fact sheet offers strategies for both. Written by Susan Workman, Director of the Family Tree Crisis Nursery project at San Juan College in Farmington, New Mexico, and Kerri Bates, coordinator of the program.

Completely Revised 45. Respite Services to Support Grandfamilies.
Many of the challenges facing grandfamilies who have become the primary caregivers for relative children are unique. This fact sheet, written by staff of the Generations United, covers these unique considerations and offers suggestions for support, funding opportunities, and examples of respite programs that provide appropriate options for grandfamilies. Written by Ana Beltran, Special Advisor to Generations United's National Center on Grandfamilies, and Jaia Peterson Lent, Deputy Executive Director at Generations United in Washington, DC in collaboration with Maggie Edgar, ARCH Senior Consultant, and Jill Kagan, ARCH Program Director.
 [FS_45 Printable PDF pdf button]

47. Children with AD/HD and Their Families
Attention Deficit/Hyperactivity Disorder is the most commonly diagnosed child psychiatric disorder in the United States and accounts for at least half of all referrals to child counseling centers. Written by Marissa Lewis, former Information Specialist for the ARCH National Resource Center.

49. Children with Prenatal Drug and/or Alcohol Exposure
Dealing with the problems of these medically fragile children poses a challenge for respite and crisis care providers. Jeanne Landdeck-Sisco, Executive Director of the Casa de los Niños, the first crisis nursery in the U.S., talks about the health conditions of drug-exposed infants, their developmental patterns, and techniques for working with these children.

50. Cultural Responsiveness in Family Services
To fully achieve the goals of respite and crisis care and other family support services, it is essential that all aspects of program operations, staff development and training incorporate and support cultural responsiveness. The shift to cultural responsiveness and multicultural programming will require change, risk-taking, training, courage, and coordinating a variety of new and different resources. Written by Shirley Pinder Cook, M.Ed., a private consultant with more than twenty years of experience providing educational and social services to diverse populations in a variety of work settings across the country.
[FS_50]  [Printable pdf_button]

Completely Revised 53. Respite and the Faith Community (updated, June 2010)
Historically, faith communities have been vital in supporting the community of which they are a part. In the early years of our nation, faith communities often provided the only existing social services, such as education and healthcare. Over time, however, this social involvement slowly diminished. As government increasingly met society’s social and economic needs, faith communities began to limit their focus to society’s spiritual needs. Today that focus is changing again, as a growing number of faith communities seek to serve not only the spiritual needs of their congregations but also the many different social needs in the larger community.
[FS_53pdf button]

54. Adult Day Care: One Form of Respite for Older Adults
Adult day care centers, also known as adult day services, have been providing a form of respite for caregivers for more than twenty years. In 1978 there were only 300 centers nationwide. By the 1980s there were 2,100 centers, and today there are about 4,000 centers nationwide, according to the National Adult Day Services Association (NADSA). NADSA reports that the need for such centers has "jumped sharply to keep pace with the mushrooming demand for home and community based services."
[FS_54]  [Printable pdf_button]

New! Completely Revised. 55. Respite for Family Caregivers of Persons with Dementia, including Alzheimer's Disease
Dementia, including Alzheimer's disease, affects millions of people in the U.S. and their families. This disease affects a person's ability to communicate and perform everyday activities. Consequently, a diagnosis can result in tremendous physical, psychological, and financial stress in the family. This fact sheet provides background for respite providers and will also help Lifespan Respite grantees create strategies to improve respite access and quality for this population.  Family caregivers may also find useful resources here.
[FS_55 Printablepdf button 

57. Respite for Adults with Mental Health Disorders was written by Diane Elmore, PhD, MPH, Associate Executive Director of the Public Interest Government Relations Office at the American Psychological Association (APA). Because of the unique nature of their respite needs, this fact sheet focuses on respite for family caregivers of individuals with mental health issues who are between the ages of 18 and 60. It is meant to assist state agencies, Lifespan Respite grantees and their collaborators, and respite providers by increasing their understanding of the unique needs of this population and their family caregivers. 
 [FS_57] [Printable pdf_button

58. Respite for Individuals with Autism is intended to provide a basic overview of useful information for respite providers who work with individuals and families affected by Autism Spectrum Disorders. It is also meant to assist Lifespan Respite grantees and their collaborators by increasing their understanding of the unique needs of this population and their family caregivers. Such insight and direction will help State Lifespan Respite programs and others develop strategies to increase respite quality, access, and capacity for this population through partnerships with community-based services and enhanced provider recruitment and training efforts. It is also intended to offer resources for family caregivers seeking to expand respite opportunities for themselves and others.
[FS_58 Printable PDFpdf_button

59. Respite for Individuals with Neurological Conditions.
Millions of adults in the United States live with various neurological conditions, including epilepsy, Alzheimer's disease and other dementias, cerebrovascular disease including stroke and headache, Amyotrophic Lateral Sclerosis (ALS), Multiple Sclerosis (MS), Parkinson's Disease, brain tumors, and acquired (ABI) or traumatic brain injury (TBI). Many, depending on the severity or progression of their condition, rely on family members, friends, or other volunteers to help them throughout the day.  However, respite for this group of individuals is difficult for family caregivers to find and to access due to limited respite options and funding sources. This fact sheet provides an overview of the population of adults with neurological conditions, and discusses considerations that families, respite providers, other program administrators and state Lifespan Respite grantees should take into account in relation to accessing or providing respite to family caregivers of these individuals.
[FS_59 Printable PDFpdf button] 

 60. Transportation Access and Respite Care: Critical Information for Family Caregivers, Care Recipients, and Respite Providers.
This fact sheet, prepared by ARCH and Easter Seals with Easter Seals Transportation Group and Everline Consulting, LLC, provides strategies for identifying transportation options and eliminating transportation barriers related to the provision and receipt of respite care. It addresses the importance of transportation and how to help family caregivers, providers and Lifespan Respite programs identify community transportation resources; determine the best transportation options; include transportation in the respite planning process;and create transportation options that meet the needs of family caregivers, care recipients, and respite workers and volunteers.
[FS_60 Printable PDF pdf button] 

61. Emergency Respite: Help for Family Caregivers in Critical Times of Need.
This fact sheet highlights a variety of situations where respite may be needed in the event of a family or personal emergency and is designed to help state agencies, community and faith-based respite providers, Lifespan Respite grantees and their collaborators understand the unique needs of this population of caregivers. Examples of state-funded or community-based emergency respite initiatives and possible funding sources are also provided. The fact sheet includes special considerations for family caregivers, respite providers and administrators, and Lifespan Respite grantees and their partners when using, planning for or implementing emergency respite services.
[FS_61 Printable PDFpdf button]



62. Respite for Family Caregivers of Children and Adults with Intellectual and Developmental Disabilities (I/DD)
This fact sheet provides a basic overview of useful information for respite providers who work with individuals and families caring for someone with I/DD. It is also meant to assist Lifespan Respite grantees and their collaborators by increasing their understanding of the unique needs of this population and their family caregivers. Useful information is also provided
for family caregivers.
[FS_62 Printable PDF]pdf button 

63. Respite for Caregivers of Veterans
Respite for caregivers of Veterans from all eras is a recognized, but often unmet need. Special considerations for the development and implementation of respite care for caregivers of younger Veterans with disabilities, and new ways to improve access to services, may be required. This fact sheet provides a basic review of respite issues for providers who work with Veterans and their caregivers. It will also help Lifespan Respite grantees better understand the unique needs of Veterans. Such insights will help State Lifespan Respite programs and others be better positioned to create strategies that address these needs and thereby increase access, quality of services and provider training to serve this population. Family caregivers may also find useful resources here. [FS_63 Printable PDF]pdf button