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Archive for October, 2019

Emergencies Happen, Be Ready to Respond


Emergencies can strike at any moment. And if a disaster occurs, whether it’s a fire, flood, hurricane, tornado, or power outage, you can maximize your peace of mind if you plan ahead. That way, you won’t have to figure out what to do on the fly, when conditions are at their most chaotic. 

Emergency planning is essentially contingency planning. Who might you need to contact in the event of an emergency? Where might you need to evacuate to? And what would you need to bring with you to maintain a semblance of normalcy even under unusual circumstances? What information would be helpful to convey to others you may come into contact with?

As the caregiver of an adult with intellectual or developmental disabilities, you may face extra obstacles that make reacting to emergencies a challenge. Perhaps, for instance, the person you care for is not particularly verbal. Collecting important information, deciding what to do, and deciding how to do it beforehand will make responding to an emergency easier.

If the person you care for is sensitive to unfamiliar or disorderly environments, you may wish to include items like headphones/earplugs, devices that can satisfy needs for stimulation, or even a small pop-up tent to provide some private space—which may be in short supply if you have to evacuate to a shelter environment.

When you create an emergency plan for an individual with IDD, it helps to put into writing unique aspects related to daily living and communication or emotional needs. An emergency plan that is especially tailored to the needs of adults living with IDD should include information that addresses the following:

  • I need HELP with. . .
  • To HELP me eat, I need . . .
  • Safety precautions
  • During an emergency, I may FEEL or ACT:
  • To help CALM me, I would like a first responder to:
  • I need to bring ______________________ with me to help me feel better.

Here’s how you can get prepared

The Pennsylvania Emergency Management Agency offers many disaster preparedness tips for people with disabilities. A sampling follows:

  • Your emergency information list should tell others you know whom to call if the individual is found unconscious, is unable to speak, or needs to evacuate quickly. If someone you care for has a communication disability, make sure your emergency information list notes the best way to communicate with the person.
  • Keep at least a seven-day supply of essential medications at all times—longer, if possible. Work with doctor(s) to get extra supplies of medications and extra copies of prescriptions. Determine how often you should replace stored medication. This helps ensure that a medicine’s effectiveness does not weaken because of long storage time.
  • If you do not drive, talk with your support network about how you will leave the area if the authorities advise an evacuation. In some communities, local government agencies offer transportation for persons needing assistance during an evacuation. Contact them in advance, if you believe you will need assistance.

 The New York Disability and Health Program and Westchester Institute for Human Development have created a comprehensive set of forms and checklists that can help prepare caregivers of an individual with IDD long before an emergency hits. They include:

  • Medical Information  
  • Immunizations and Medications  
  • Daily Living/Mobility Needs  
  • Communication/Emotional Needs  
  • Contact Information  
  • Escape Plan (floor plan) 
  • Steps in an Emergency  
  • My Documents  
  • My Health Summary

All people, including adults with IDD, do better in emergency situations when they are with people they know. Make sure the individual knows important names, phone numbers, and addresses. If their memory is unreliable, ensure they have important contact information on them at all times. The only way to be prepared is to plan ahead.

Emergency Preparedness Resources: 

Director of Programs

The Director of Programs at Casmir Care Services will develop, implement and monitor procedures to meet agency policies and contract management including the preparation of comprehensive reports for funding sources. This professional shall embrace and embody the mission, vision, guiding principles and the organizational goals of Casmir Care Services. The programs that will come under the supervision of the Director of Programs include the Home and Community Based Services Programs as well as the Chapter 6400 Community Homes Residential Program of the agency

Responsibilities Include:

  • Oversee the Home and Community Based Services Program and Chapter 6400 Community Homes for Indidivudlas with Intellectual Disabilities. 
  • Provide input for budget development; manage and implement program budgets; ensure programs stay within allocated budget; follow policies and procedures for procurement; ensure financial records are complete, thorough and submitted in a timely manner; complete audits of programs and consumer finances to ensure funds are safeguarded. 
  • Be an effective member of the multi-disciplinary team by being able to problem solve issues with Individuals, families and Supports Coordination Agencies. Experience working with/ relating with Supports Coordination agencies essential. 
  • Arrange for, as well as facilitate staff development, education and training activities to meet the need of the overall agency. 
  • Good knowledge of 55 PA Code Chapters 51 and Chapters 52 regulations, Chapter 6400 regulations highly essential.  
  • Ensure adherence to PA Department of Human Services’ (DHS) Office of Developmental Programs (ODP), Office of Long Term Living (OLTL) and Bureau of Autism Services Provider regulations.  
  • Ensure the highest quality of care for the Individuals supported. 
  • Oversee the Individual referral/ assessment/intake process to ensure that a broad and needed range of services are matched with the identified need in the community.
  • Implement approved procedural and operating practices for all services in keeping with legal, regulatory and contractual requirements. 
  • The Director of Programs will be expected to grow the overall Individual base of the agency by employing good networking, communication and knowledge skills.  Knowledge of the PA Intellectual Disability, Autism and Office of Long Term Living System is important. 

Educational/Experience Requirements:

  • Master’s degree in the Human Services field strongly desired.
  • Minimum of 3-5 years in the Human Services [preferably Home and Community Based and 6400 regulated Residential Services] with supervisory/managerial responsibilities. 

Other Requirements

  • Must be flexible to meet Individual and Program’s needs
  • Must have a valid driver’s license; good driving record and access to a reliable vehicle to attend trainings, meeting and networking events. 
  • Must have the ability to obtain clearances as defined by regulations. 

How to apply

Interested candidates may send their resume to hr@casmircares.com.

For Adults with IDD and Dementia, Maintain a Regular Daily Routine

[This is Part 3 of a three-part series that explores dementia in people with intellectual and developmental disabilities. Part 1 focuses on how to recognize signs of dementia. Part 2 focuses on communication tips for caregivers who work with adults living with IDD and dementia. This part focuses on how to deal with behavioral symptoms of dementia.]

When it comes to caring for adults living with intellectual and developmental disabilities (IDD) plus dementia, the importance of maintaining a daily routine cannot be underestimated. 

A guide from the Administration for Community Living tells the story of a respite worker who was helping care for a 58-year-old man with Down syndrome and dementia. During each visit, she would try to help him out of bed and get dressed. But he would become upset, refuse to get out of bed, and yell at her to go away. 

His mother reported that on the days the respite caregiver was not there, she had no trouble helping the individual get out of bed. When the respite worker asked the mother about her routine, she learned that the mother would play a wind-up music box on her son’s dresser before he woke. 

She would also hum or sing softly with the music as he woke up. Then she would talk about the day ahead and the weather. When the respite worker tried this same routine the next morning, she was able to help him get out of bed. For once, he did not get upset with her and he did not refuse to get out of bed. 

The takeaway? Don’t forget that family members can be resources. It made all the difference to ask the mother what worked for her. By replicating the mother’s routine, the respite worker succeeded in learning from the mother and increasing the man’s level of comfort with getting out of bed and getting dressed with the respite worker’s help.

Promoting structure and consistency can be a useful strategy for minimizing or managing the behavioral changes in adults with IDD living with dementia.  

Here are a few tips to reduce behavioral symptoms in people living with IDD and dementia:

  • Anticipate what the person will need based on what you know about their daily routine, family members, likes and dislikes, and any significant or traumatic life events.
  • Maintain as regular a routine as possible. This applies to the person’s sleep/waking schedule, mealtimes, and daily personal care activities.
  • Be on the lookout so you can recognize any discomfort or if they look uneasy. Is the person hungry or cold? Does he need to use the bathroom or have another physical need? 
  • Watch for and try to resolve signs of boredom, fear, uncertainty, or fatigue. Irritability, fidgeting, or pacing might tip you off that something is awry.
  • Select meaningful activities that reinforce a person’s sense of identity and purpose.

Learn more:

Dementia Evaluation and Care in Adults with IDD

IDD and Dementia Strategy Guide
Alzheimer’s Association: Stages and Behaviors






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