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Service Delivery Innovation Profile

Nonprofit Organization Enhances Access to Medical and Dental Care for Those With Disabilities by Helping Them Overcome Their Fears


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Summary

Practice Without Pressure, Inc. helps people with disabilities access medical, dental, and personal care by training them to overcome their fear of routine procedures. The organization offers practice training sessions for individuals with disabilities, along with medical, dental, and personal care treatment and services; mentoring sessions for parents and caregivers; patient education programs related to women's health; oral health training for direct support professionals; and education and training for local health care professionals and students on how to support people with disabilities to receive care. The program has enhanced access to medical, dental, and personal care services for numerous individuals, many of whom overcame their fears and now receive care without sedation or restraints.

Evidence Rating (What is this?)

Suggestive: The evidence consists of post-implementation data on the numbers of individuals with disabilities and community-based providers served by the program.
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Developing Organizations

Practice Without Pressure, Inc.
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Date First Implemented

2002
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Patient Population

Vulnerable Populations > Disabled (developmentally)end pp

Problem Addressed

People with disabilities often lack access to basic primary and preventive care due to a lack of trained medical and dental providers who can provide care effectively. When receiving care from untrained providers, individuals with disabilities are often restrained and sedated, causing fear and anxiety. As a result, they are often reluctant to receive care, which places them at higher risk for health problems.
  • Limited access to care: Individuals with disabilities do not receive many of the basic primary and preventive services that are routine for most individuals, including weigh-ins, preventive dental care, x-rays, physical examinations, vision screenings, pelvic exams, and colonoscopies.1 Those with mental disabilities often have to contact 50 physicians before finding one trained and willing to treat them.1 Obtaining care can be particularly difficult for young adults with developmental disabilities as they make the transition from coordinated childhood care to adult services.2
  • Provider inability to treat effectively, increasing fear of procedures: Many providers lack the time, knowledge, skills, and/or financial incentive to treat those with disabilities effectively. As a result, individuals are often restrained and sedated to receive care, causing fear and anxiety each time they go for treatment or a procedure. The problem of providing competent care is exacerbated by insurance companies that do not adequately compensate providers for the time required to coordinate and provide care for these patients.2
  • Leading to higher risks of health problems: The absence of professional training on disability competency issues for health care practitioners is one of the most significant factors contributing to health disparities for people with disabilities.2 It translates into higher risks of health problems with 40 percent of adults with disabilities reporting fair or poor health, as compared to adults without disabilities (10 percent).3 Women with disabilities face particular difficulties, as they are less likely to receive Pap tests, mammograms, and screening for heart disease and tend to have less knowledge and awareness of risk factors for cardiovascular disease.1 Furthermore, adults with disabilities are more likely than adults without disabilities to smoke, to be obese, and to be physically inactive.3

What They Did

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Description of the Innovative Activity

Practice Without Pressure, Inc. helps people with disabilities access medical, dental, and personal care by training them to overcome their fear of routine procedures. The organization offers practice training sessions for individuals with disabilities, mentoring sessions for parents and caregivers, medical and personal care services, patient education programs related to women's health, and education and training for local health care and direct support professionals, as well as students on how to care for those with disabilities. Key program elements include the following:
  • Patient intake and assessment: Two trained practice specialists conduct each intake session with the patient/client and a parent or other caregiver. They gather medical and personal information about the individual, including how the person communicates; preferred rewards, such as goldfish crackers or a DVD; and situations to avoid, such as loud voices or sudden movements. They also identify any concerns the patient might have about the particular procedure(s) being addressed or provided. The specialists then explain what happens during a practice session and the number of sessions that might be required. Depending on the service requested, how ready the patient/client is for the procedure, and scheduling issues, a practice session might take place right after the intake session.
  • Preparation for procedures: Practice Without Pressure helps the individual patient/client, his or her parent or caregiver, and the provider prepare for the procedure(s), as outlined below:
    • Practice sessions for patient/client: Practice sessions can occur at the Practice Without Pressure center or at individual or group homes. Every practice session begins with a demonstration of the treatment or personal care process on a family member or caregiver, who remains in the room throughout the session. The specialist shows the individual a series of sequence cards that identify and provide visual cues for each step of the procedure. If the patient/client is to receive the service(s) at the center, he or she will meet the provider and view the treatment room as part of his/her practice sessions.  
    • Mentor sessions for parents and caregivers: Mentor sessions are scheduled separately from practice sessions, although they may take place before or after a practice session. During these sessions, the practice specialist explains more about the procedure and provides guidance to the parent or caregiver on how to reinforce the techniques used during the practice sessions. Based on his/her assessment and observations, the specialist calls attention to interpersonal dynamics between patient and caregiver/parent that reinforce trust and empowerment, and also highlights those that do not.
    • Provider preparation: Practice specialists work closely with providers at the center to enhance the patient experience. In some instances, they take pictures of the individual and videotape practice sessions for the provider's review. In other instances, the provider sits in on the practice session(s).
    • Provision of treatment in sensitive manner: Practice Without Pressure often provides the requisite treatment or service at its treatment center. The center offers general dentistry, blood draws, injections, gynecological exams, support before a surgical procedure, and hair and nail care. Appointments are not scheduled until everyone agrees that the individual is ready. During a procedure, the patient/client holds up a "STOP" card if he/she becomes uncomfortable. This card not only increases trust and confidence but also lets the provider know when a patient/client feels discomfort or anxiety.    
  • Women's health programs: Practice Without Pressure has developed a breast health awareness program, Treasure Your Health, for adolescent girls and women with disabilities, as well as their family members and caregivers. This program addresses what it means to have a breast lump, what to do if one is found, and what happens during a mammogram. The organization also offers a program for women and teens with disabilities to prepare them for women's health exams and mammograms, which specialists conduct in four, 1-hour sessions.
  • Education and training for professionals and students: Practice Without Pressure offers workshops and presentations on its care model to dental, medical, direct support, and personal care professionals. Sessions are typically held in collaboration with schools and medical and dental associations. Many direct support professionals who work with individuals in local community living settings, such as group homes, participate in the organization's Oral Health in the Home training program. Practice specialists also conduct a 2-hour program as part of the Gerontology and Special Needs Curriculum at the University of Maryland Dental School in Baltimore.  

Context of the Innovation

The impetus for the program came from Deborah A. Jastrebski, who faced challenges obtaining medical care for her son who has Down Syndrome. Due to the inability of medical and other professionals to address his fear and anxiety, Marc had to be restrained or sedated each time he underwent a medical test or procedure.  Over time, his fear and resistance to receiving care increased. When he turned 12 years old, Ms. Jastrebski realized she had to do something to help him. Knowing how he learned and processed information, Ms. Jastrebski realized that Marc's anxiety and fear could be greatly reduced if he understood in advance of a procedure exactly what was going to occur. She developed the practice model by identifying each step required for a blood draw procedure and practicing it with her son. She refined the model over time based on observations, research, interactions with medical professionals, and work with parents of other children with disabilities. As the model evolved, she recognized its potential to help many others, and decided to create a nonprofit business (Practice Without Pressure, Inc.) to do so. As a result of her work, Ms. Jastrebski is a 2011 Robert Wood Johnson Foundation Community Health Leader.

Did It Work?

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Results

The program has enhanced access to medical, dental, and personal care services for numerous individuals with disabilities, many of whom overcame their fears and received care without sedation.
  • Enhanced access to care and education: As of December 1, 2011, 350 individuals with disabilities participated in practice sessions (along with 350 family members and/or caregivers) and underwent procedures. Between April and December, 2011, 18 women with disabilities completed clinical breast exams as a result of their participation in Treasure Your Health, the breast health awareness program; more than 1,000 teens and women with disabilities and their families/caregivers have completed the program. In the 12 months ending March 31, 2010, 64 women with disabilities and their caregivers participated in women's health classes.
  • Less need for sedation:  Roughly 80 percent of adults served by Practice Without Pressure under a Delaware Developmental Disability Services contract, in the 12-month period ending January 2011, no longer needed sedation for dental care.
  • More educated providers: Since 2005, 186 dental students and professionals have completed Practice Without Pressure workshops. An additional 900 dental students and professionals have attended educational presentations about the treatment model.

Evidence Rating (What is this?)

Suggestive: The evidence consists of post-implementation data on the numbers of individuals with disabilities and community-based providers served by the program.

How They Did It

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Planning and Development Process

Key steps included the following:
  • Developing model: As noted, Ms. Jastrebski developed the model while working with her son and the parents of other children with disabilities. This work included developing a workshop presentation for medical professionals on treating individuals with disabilities.
  • Working as independent provider: Before setting up a nonprofit corporation, Ms. Jastrebski offered practice sessions to individuals in their homes and gave workshop presentations to dental hygienists studying at the local community college. During this time, she established relationships with numerous individuals who supported her efforts and encouraged her to form a business through which she could make the model available to a larger audience.
  • Incorporating as nonprofit and raising funds: In 2001, Ms. Jastrebski filed for 501(c) 3 status, which she received in 2002. Ms. Jastrebski and her supporters applied to national, regional, and Delaware-based foundations to obtain financial support for expanding the program. The Longwood and Welfare Foundations, which are dedicated to funding programs in Delaware and southern Pennsylvania, provided significant seed money for expansion.
  • Expanding model to include caregivers: Ms. Jastrebski expanded the model by creating a separate training session designed to help parents and other caregivers reinforce and apply the techniques and methods used in the practice sessions.
  • Testing model with health care professionals: After success with blood draws, Ms. Jastrebski took the practice model to her son's dentist who fully embraced its efficacy. She contacted the dental hygiene program at Delaware Technical & Community College to recommend the model's inclusion in the curriculum for dental hygienists. The department chair agreed to pilot test the model. Based on the pilot's success, Ms. Jastrebski worked with other dental and medical professionals to create a 2-hour program that can be adapted for use in various professional education environments.
  • Developing training for specialists: In preparation for expanding her business, Ms. Jastrebski developed the practice specialist training program, which consists of approximately 10 hours of classroom instruction and an apprenticeship that lasts 6 to 10 months depending on an individual's skills and the availability of apprenticeship opportunities.
  • Opening center to provide services: With funding and support from numerous foundations, the organization opened its first practice and treatment center in November 2009.

Resources Used and Skills Needed

  • Staffing: Including Ms. Jastrebski, the organization has 20 staff working in operations, development and support services, outreach and marketing, medical and dental services, phlebotomy, and hair and nail care.
  • Costs: The current annual operating budget totals approximately $750,000.
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Funding Sources

Longwood Foundation; Welfare Foundation; Chichester DuPont Foundation; Laffey-McHugh Foundation; Crestlea Foundation; DFRC; Gannet Foundation; Marmot Foundation
Numerous national, regional, and local organizations have provided funding to the program; those listed were instrumental in helping Practice Without Pressure purchase its treatment center. In addition, the Susan G. Komen for the Cure-Philadelphia Affiliate, the Robin Foundation, Fund for Women, and Bank of America have provided financial support for women's health programs. Practice Without Pressure also has contracts with the State of Delaware for direct services to individuals with disabilities supported by Delaware Developmental Disability Services. Other sources of funds include insurance coverage, private payments by families for medical and dental services, as well as practice sessions and consulting services.end fs

Tools and Other Resources

A Webinar on Practice Without Pressure is available at https://achieva.webex.com/mw0306ld/mywebex/default.do?siteurl=achieva.

The Association on Health and Disability Web site contains a wide range of information on health- and disability-related topics, available at http://www.aahd.us/.

Adoption Considerations

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Getting Started with This Innovation

  • Develop presentation to sell model: Would-be adopters need to be fully prepared to promote the effectiveness of and need for the program to a wide variety of audiences. To that end, develop presentation materials and an oral presentation that describes all elements of the practice model. 
  • Identify provider champions: The program's success depends in large part on developing a base of support among local dental and medical providers. To garner this support, would-be adopters can make presentations to individual practitioners, medical and dental societies, college and university department heads, and other organizations involved in dental and medical education and health care delivery.
  • Develop outreach plan: To promote the program, would-be adopters should develop an outreach plan to key family support groups and other organizations serving individuals with disabilities and their families. The plan should identify these organizations and lay out a systematic approach for making initial contact and winning their support.

Sustaining This Innovation

  • Promote coverage by documenting benefits: Work with state legislatures, state agencies, and insurance companies to secure coverage of the practice sessions. Success will require documentation of the program's positive impact on access to treatment (thus improving the health of those with disabilities) and its ability to reduce costs by eliminating the need to sedate or restrain individuals during treatment.
  • Continue promoting need for provider education: Individuals with disabilities, especially minorities, continue to be underserved. To address this issue, would-be adopters need to promote ongoing education of providers on how to provide high-quality services to this population.

More Information

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Contact the Innovator

Deborah Jastrebski
Founder and CEO
Practice Without Pressure, Inc.
2470 Sunset Lake Road
Newark, DE 19702
(302) 832-2800
E-mail: deb@pwpde.com

Innovator Disclosures

Ms. Jastrebski has not indicated whether she has financial interests or business/professional affiliations relevant to the work described in this profile; however, information on funders is available in the Funding Sources section.

References/Related Articles

More information about Practice Without Pressure can be found at www.pwpde.com.

Footnotes

1 Health Disparities and People with Disabilities. American Association on Health and Disability. Fact Sheet. Rockville, MD; March 2011. Available at: http://www.aahd.us/wp-content/uploads/2012/03/HealthDisparities2011.pdf (If you don't have the software to open this PDF, download free Adobe Acrobat ReaderĀ® software External Web Site Policy.).
2 The Current State of Health Care for People with Disabilities. National Council on Disability, Washington, D.C.; 2009. Available at: http://www.ncd.gov/publications/2009/Sept302009
3 Promoting the Health of People with Disabilities. Centers for Disease Control and Prevention Fact Sheet. Available at: http://www.cdc.gov/ncbddd/disabilityandhealth/pdf/PromotingHealth508.pdf
Comment on this Innovation

Disclaimer: The inclusion of an innovation in the Innovations Exchange does not constitute or imply an endorsement by the U.S. Department of Health and Human Services, the Agency for Healthcare Research and Quality, or Westat of the innovation or of the submitter or developer of the innovation. Read more.

Original publication: April 11, 2012.
Original publication indicates the date the profile was first posted to the Innovations Exchange.

Last updated: May 07, 2014.
Last updated indicates the date the most recent changes to the profile were posted to the Innovations Exchange.

Date verified by innovator: March 27, 2013.
Date verified by innovator indicates the most recent date the innovator provided feedback during the annual review process. The innovator is invited to review, update, and verify the profile annually.

Back Story
Mark, a 48-year-old man who has autism and other challenges, loves to sing, but when faced with the possibility of going to the dentist, his actions gave voice to his fear. His frantic refusal to receive care required Mark to be so heavily sedated that he required Narcan, a drug...

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