The Heroes and Heroines of the I/DD Health Care System
Most people would agree, especially after any type of hospitalization, that nurses are the unsung heroes and heroines of the health care system in our country, as they provide much of the critical care received. Similarly, for many people who have intellectual and developmental disabilities, they rely heavily upon specialized caregivers including Direct Support Professionals (DSPs), Care Managers, and Nurses, to help them navigate each day and become the backbone of this specialized health care system. The most conspicuous difference is that people with I/DD develop longstanding relationships with their caregivers and mentors, as their situations are generally permanent. Many people with disabilities leave their families as they become adults, living in residences and/or receiving day services outside of the home. CDS Life Transitions is a human services organization with seven different affiliates, employing Direct Support Professionals, Care Managers, and Nurses through its CDS Monarch and Prime Care Coordination human service affiliates.
Direct Support Professionals
For organizations like CDS Monarch, that provide day habilitation services and supervised residential living for individuals with intellectual and developmental disabilities, DSPs are on the front lines of care, assuming multiple roles and performing a multitude of services each day. DSPs act as caregivers, teachers, advocates and perhaps most importantly, friends. DSPs often are the voices for individuals who cannot use their own voices, so communication skills are paramount. DSPs must be unrelenting in encouraging self-direction for their patients as an end goal. Over a longer horizon, DSPs form partnerships with both individuals and their families and loved ones.
Whether DSPs work in a supervised residential setting or a day habilitation setting, many of the day to day job roles are similar in nature and encompass:
- Helping individuals to attain educational, employment and career goals
- Providing meals or assisting with cooking
- Meal planning
- Assisting with shopping
- Teaching independent living skills
- Dispensing medications
- Facilitating stimulation through arts, music or other educational resources
- Guiding exercise or physical activities
- Encouraging interaction with peers
- Providing companionship
- Assisting with cleaning
- Assisting with hygiene, showering/bathing, etc.
- Assisting with nighttime routine
- Transporting individuals
A great deal of DSP attention is focused on detailed documentation, which provides a playbook for each person, invaluable in maintaining continuity between shifts and for tracking progress.
DSPs engage in extensive training, as the role demands physical and mental endurance, as well as a values-based approach to care. Certain certifications such as First Aid and CPR and continuing education/training are required. DSPs adhere to a Code of Ethics from the National Alliance of Direct Support Professionals, that addresses conduct and professionalism in the following areas:
- Person-Centered Supports
- Promoting Physical and Emotional Well-Being
- Integrity and Responsibility
- Justice, Fairness and Equity
Similar to nursing, the role of Direct Support Professional is a true calling. Certain skills and characteristics predispose certain people for the role of DSP. Compassion is first and foremost, but patience, flexibility, sense of humor, common sense, and resourcefulness also position DSPs well for the work at hand when caring for people with I/DD. Given the synergies in the nature of their work, DSPs sometimes go on to attain nursing degrees.=
CDS Monarch is one of the oldest organizations in the Finger Lakes Region that cares for the I/DD population through its residences and day habilitation services. CDS Monarch recognizes the central role of DSPs in its care network, and it provides its more than 400 DSPs with excellent benefits.
The role that DSPs play in the I/DD care system cannot be overstated, as these professionals make a positive impact on many lives every day.
Another role that is critical for achieving security and quality of living for people with I/DD is that of Care Manager. Within Care Coordination Organizations like Prime Care Coordination, that provide life planning and service coordination for individuals with intellectual and developmental disabilities, Care Managers fulfill a critical role in their client’s care. Some of the core duties of a Care Manager include:
- Coordinating medical treatment with health care providers
- Administering routine health assessments
- Developing care plans
- Monitoring medication compliance
- Building relationships with patients
- Advocating for patients’ health
- Connecting patients with social and community support resources
Nursing experience is a helpful but being a people person is an absolute mandate for Care Managers. Clinical/nursing knowledge is extremely beneficial for Care Managers to be most effective, yet possessing good relationship building skills is the most critical part of the job. Nurturing a relationship ultimately helps to motivate patients and to encourage compliance with treatment plans.
Conversation, and at some levels friendship, go a long way in ensuring patient success. Showing interest in a patient’s life, family, and history help Care Managers to understand the patient better and help foster relationships and trust. Speaking about a patient’s condition in simple terms, in a non-threatening, non-technical, non-jargon laden manner is also important as Care Managers keep patients apprised of their conditions. A large part of a typical Care Manager’s day is consumed by patient discussion, including discussion of medical conditions, treatment plan goals, and general discourse.
Relationship building extends beyond the patient to physicians and their administrative staff, as well as the teams within community support systems.
Care Managers serve as the eyes and ears that help identify emerging medical challenges or changes in condition that need to be addressed by patients’ health care providers. By taking a proactive stance, Care Managers can help patients avoid injury, hospitalization, and other potential setbacks.
As in the larger health care system, nurses employed by CDS Life Transitions, across affiliates, perform an essential role in assessing and monitoring the medical conditions of all individuals who utilize the diverse services of the organization. Nurses are also tasked with assuring clinical compliance with all state and federal standards designated for people with intellectual and developmental disabilities.
Nurses at CDS Life Transitions work closely with physicians to create and implement discrete care plans for each individual, and they train DSPs on the plans, policies, and procedures at the various service sites. They play a clinical supervisory role and collaborate with DSPs, Care Managers and other team members. Nurses nurture relationships with patients, families and physicians, acting as the key point of contact and liaison between all parties.
Similar to DSPs and Care Managers, building solid relationships is central to what Nurses do at CDS Life Transitions. Direct Support Professionals, Care Managers, and Nurses are integral in sustaining a culture of compassion that enables people with intellectual and developmental disabilities to truly thrive.