Overview

Children who are technology assisted or have complex medical needs are eligible for our services.

We offer three care programs at Almost Home Kids: transitional, respite and respite transportation care.

Transition Care referrals are accepted from Hospital Discharge Planners, Social Workers, Nurses, and Physicians. Parents who feel their child would benefit from Transitional Care can contact their child’s community or hospital care coordinator or social worker.

In addition to the care programs, Almost Home Kids provides:

  • Support to the family by actively seeking financial assistance
  • Training programs for families and health care providers
  • Community support, training and exceptional medical care as your child grows. Once a child receives care at Almost Home Kids, they are part of the Almost Home Kids Family.

To refer a child for care at AHK, please contact: Layenie Anderson, Director of Case Management at LAnderson@almosthomekids.org


Respite

woman-reading

Respite: The short term stay is for a child who has medical complexities and/or may be technology assisted. From a 24 hour stay to one lasting up to 14 days, each child is provided with medical/nursing care and recreational activities in a secure and therapeutic environment. Families may choose this program for a variety of circumstances: temporary absence of private duty nursing care at home, parent illness, vacations, family emergencies and much needed rest.


Transitional Care

woman-bedside

Transitional Care: This is a short term stay, up to 120 days, and provides the bridge between hospital and home for a child who is clinically ready for discharge from a hospital, yet important factors need to be considered in order to bring the child home safely. The family may need further support through training and equipment education regarding the clinical needs of the child and/or nursing agency staffing plan.


Transportation

Respite Transportation: Children who have medical complexities can be safely transported from their home to Almost Home Kids, under the supervision of a medical professional, for respite care. Children with complex medical conditions that rely on medical technology require a significant amount of supplies and back up equipment to travel with them – the logistics of moving their supplies in addition to transporting the child safely can also be difficult for families. Having a transportation service like Angel Wheels makes the process manageable and efficient.

The program is a support arm of the respite care program and provides an easy way for families to more effectively utilize respite services at Almost Home Kids.

Please contact Layenie Anderson, Director of Case Management if you would like to learn more about this program: landerson@almosthomekids.org


Emergency Respite

Emergency Respite:  In the event a family is faced with an unforeseen emergency, such as a death in the family or a parent/caregiver’s unscheduled hospital stay, Almost Home Kids will make every effort to accommodate an emergency respite stay for their child with medical complexities.


International Program

International Program: Almost Home Kids welcomes children and families from all around the globe, enriching our home with the diversity of different cultures, languages and foods.

The International Patient Services team from Ann & Robert H. Lurie Children’s Hospital of Chicago and RIC’s Global Patient Services help ease the transition and make our families feel at home.

If you are interested in learning more about this program, please contact Layenie Anderson at landerson@almosthomekids.org


Child Life Program

Child Life Program: Our Child Life Program is an integral part of the overall care and well being of each child that comes to Almost Home Kids. By facilitating play opportunities, at the bedside and in playrooms, their continued growth and development is greatly enhanced.

The Child Life Specialist benefits our program by:

  • Creating a sense of routine by helping children maintain independence, self-esteem and confidence.
  • Minimizing stress by encouraging positive coping behaviors.
  • Helping children prepare for and understand medical procedures and experiences.

Child Life Practicum at AHK (next availability April 2017)
The Child Life Practicum provides students interested in entering the field of Child Life, a practicum opportunity to work with children of various developmental levels in a pediatric transitional and respite home-like facility while being supervised by a Certified Child Life Specialist.

AHK Child Life Practicum Application

If you are interested in learning more about the program please contact Kari Bartelson, CCLS, at kbartelson@luriechildrens.org


Sleep Medicine

Sleep Medicine: Almost Home Kids provides sleep studies and sleep medicine consults onsite at our Chicago facility. Thanks to our affiliation with Ann & Robert H. Lurie Children’s Hospital of Chicago we are able to provide evaluations by the Lurie Children’s sleep medicine team, with reports and recommendations going to the child’s primary care physician and our own AHK Medical Director.

Lurie Children’s Sleep Medicine’s Director is Stephen H. Sheldon, DO. Dr. Sheldon is board-certified in both pediatrics and sleep disorders medicine. He has served as a member of the board of directors and was Secretary/Treasurer of the American Academy of Sleep Medicine. He has been a faculty member of the National Sleep Medicine Course (sponsored by the AASM) and is course director of the Advanced Pediatric Sleep Medicine Program of the Atlanta School of Sleep Medicine, Northside Hospital, Atlanta, Georgia.


Physical Therapy

Physical Therapy: Children staying at AHK are considered medically complex due to a wide variety of medical diagnoses including prematurity, chromosomal defects, cerebral palsy, respiratory problems that require a ventilator, traumatic brain injury or spinal cord injury. They all are at risk for physical limitations and delays in their overall development due to their medical diagnosis, history of prematurity and prolonged hospitalizations.

At AHK one of our goals is to improve the quality of life for children and families. Physical therapists focus on improving physical abilities and promoting mobility, function and quality of life. They accomplish this through therapeutic exercise, strength building, use of assistive devices and education. We are able to offer therapy sessions at each of our locations, eliminating the need to physically go, or be taken to, a hospital or clinic, which is often inconvenient or very challenging for children who require specialized transportation. Above all, these therapies prevent further disability, improve strength and mobility.

AHK’s Physical Therapy Program was launched with the help of many generous friends. The Tellabs Foundation awarded $50,000 seed dollars to create the new program, which improves the health of children with disabilities through education and treatment. In addition to Tellabs Foundation our PT donors include Grant Healthcare Foundation, Alvin H. Baum Family Fund and The Field Foundation of Illinois


Medical Education

Keith Veselik MD Medical Education Program
Pediatric Elective

Faculty Advisor:
Peter J. Smith, MD, MA – Almost Home Kids, 211 E. Grand Avenue

Program Coordinator:
Dedra D. Smith
E: desmith@almosthomekids.org
T: (312) 227-1227

Background and Justification:
Since children with special healthcare needs are living longer lives, the need for doctors who are competent in their care is growing. Unfortunately, the current reality is that most doctors can complete their entire 7-10 years of training and never learn directly how to serve a child as complex as the children cared for in this outpatient setting. On this rotation, the student will learn the management of this type of complex child in the context of a transitional and respite care center. The student will receive a comprehensive experience with development of a plan of treatment options, monitoring, cardiorespiratory support and integration of physiology into daily clinical practice.

Objectives:
To expose the learners to the wide variety of clinical and non-clinical situations encountered while providing care to children with complex health needs in a transition and respite care center.

Time Commitment of Rotation:

  • One month (4 weeks) duration
  • 12-hour shifts (7am – 7pm)
  • Multi-disciplinary rounds with Medical Director

Didactic Requirements of Rotation:

  • Completion of pre-rotation assessment PRIOR to rotation
  • Click here for the Almost Home Kids FAQ and Names to Know
  • Completion of post-rotation assessment within 3 days of end of rotation
  • Readings and self-directed learning
  • Completion of a “written product” before end of rotation
    (Assignment will be discussed with Medical Director)

Evaluation and persons performing the evaluation:

  • Students will be evaluated by Dr. Peter J. Smith, Medical Director
  • The students will be evaluated based on clinical performance and observation. All clinical staff who works with the student will be involved in the evaluation process

Curriculum Resources for Medical Education at Almost Home Kids, Chicago

The following resources are readings and internet links for self-directed learning.
PRE-READING (Read prior to attendance)
Levy listing of developmental disorders
Style Guide Relevant to Disability Issues
Two Doctors Reflect

Additional Articles:

Websites:
DSCC: http://www.uic.edu/hsc/dscc/
MCHB: http://mchb.hrsa.gov/programs/titlevgrants/
HRSA: http://www.hrsa.gov/about/index.html

Any questions? Contact Dedra Smith – desmith@almosthomekids.org


Parent/Caregiver Resources

Parent/Caregiver Resources

American Academy of Pediatrics
Dedicated to the Health of all Children, this physician-run academy provides an excellent source of information to parents.
www.aap.org

American Cancer Society
Information on childhood cancer:
www.cancer.org/docroot/ETO/content/ETO_2_6X_When_Your_Child_Has_Cancer_7.asp?sitearea=&level

American Lung Association of Illinois – Greater Chicago
This statewide health organization has the state’s leading experts on lung disease as members. The mission is to make a world free of lung disease and to promote lung health.
www.lungil.org

The ARC of Illinois
Statewide Health Information Resource for Families of Children and Youth with Special Needs. It is committed to empowering persons with disabilities to achieve full participation in community life through informed choices.
www.thearcofil.org
www.thearcofil.org/familytofamily

Access Living
We equip people with disabilities with the tools to overcome societal barriers to inclusion by imparting independent living skills, teaching economic self-sufficiency, and enabling people with disabilities to transition to autonomous community living
www.accessliving.org

Center for Disability & Elder Law
The Chicago Bar Association founded this nonprofit organization dedicated to protecting and advancing the legal rights of low-income persons with disabilities and senior citizens in Cook County.
www.probonocdel.org

The Center for Independence through Conductive Education
Provides unique intensive group method of special education which expects and demands active learning and participation by the child in attempting to overcome his/her motor disability (i.e., cerebral palsy, traumatic brain injury), The founder’s motto: When you do not educate the child to be independent, you educate the child to be dependent. Dr. Andras Peto.
www.center-for-independence.org

Community Support Services
A private not-for-profit service agency that initiates provides and promotes services for people with developmental disabilities and their families, within their communities.
www.communitysupportservices.org

Easter Seals Disability Services
Easter Seals DuPage and the Fox Valley Region provides services for infants, children and adults with disabilities to achieve maximum independence, and to provide support for the families who love and care for them.
dfvr.easterseals.com/site/PageServer?pagename=ILDU_contactus

Ever Thrive Illinois
Ever Thrive Illinois works to improve the health of women, children, and families over the lifespan through community engagement, partnerships, policy analysis, education, and advocacy.
www.everthriveil.org

Family Support Network of Illinois
Their mission is to unify individuals with disabilities and their families to advocate for funding, services, and community resources that strengthen and support the individual and empowering them to life in their own homes.
www.familysupportnetwork.org

Health & Disability Advocates
HDA is a social innovator that promotes health and economic security for vulnerable populations so that they can lead secure, dignified lives. HDA works with, but is not limited to, the following: low income families and individuals, children, youth, older adults, adults with disabilities, and Veterans and service members.
www.hdadvocates.org

Make-a-Wish Foundation
Since 1980 this foundation has enriched the lives of children with life-threatening medical conditions through its wish-granting work.
www.wish.org

Medline Plus
Providing “Trusted Health Information for You” this government website has topics and news on conditions, diseases and wellness.
medlineplus.gov

National Center for Learning Disabilities
Special Education Services for students with learning disabilities are covered under the Individuals with
Disabilities Learning Act (IDEA) which provides states with federal funds to help make special education services available to students with disabilities.
www.ncld.org/content/view/902/456086

Normal Moments, Inc.
Helping parents of children with critical illnesses by providing support to them in the home, in hospital and via web resources.
www.normalmoments.org

PACT, Inc
An independent Services Coordination Agency in DuPage County, providing individual service coordination for people with disabilities.
www.pactinc.net

The Kids Equipment Network
We are a not-for-profit 501(c)(3) organization dedicated to connecting children with special needs, from birth to 21 years of age, who have little or no funding, with needed durable adaptive equipment.
www.tken.org

Governmental Agencies

Departments of Health – by County in Illinois
Your resource for many Health Services: mental health, community and environmental health.
www.idph.state.il.us/local/alpha.htm

Specific websites for childhood immunizations and the WIC programs in some Northern Illinois counties are given below:

WIC: Women Infants & Children Clinics
WIC is a federally funded program to aid low income pregnant, postpartum and breastfeeding women and children up to the age of 5 who are at nutritional risk. The Food and Nutrition Services branch of the U.S. Department of Agriculture makes grants to states to provide supplemental foods, health care referral and nutrition education to women, infants and children.

Cook County:
www.cookcountypublichealth.org/programs/child/wic.shtml

DeKalb County:
www.dekalbhealth.net/clinical-services/wic.asp

DuPage County:
www.dupagehealth.org/services/wic.html

Kane County:
www.kanehealth.com/wic.htm

Lake County:
www.co.lake.il.us/health/pcs/wic.asp

McHenry County:
www.co.mchenry.il.us/Common/CountyDpt/health/hlthWIC.asp

Will County:
www.willcountyhealth.org/en/do.jsp?id=66

Winnebago County:
www.wchd.org/faq.cfm?cat=324

Childhood Immunizations

Cook County:
www.cookcountypublichealth.org/programs/communicable/Child%20Immuniz/immclinics.shtml

DeKalb County:
www.dekalbhealth.net/clinical-services/mothers-children.asp

DuPage County:
www.wnhs.org/studserv/WalkinClinics_eng.pdf

Kane County:
www.kanehealth.com/immunizations.htm

Lake County:
www.co.lake.il.us/health/chs/disease/immun.asp

McHenry County:
www.co.mchenry.il.us/Common/CountyDpt/health/hlthCInformation.asp

Will County:
www.willcountyhealth.org/en/_uploads/_files/_news/_97/InfantImmunizations.pdf

Winnebago County:
www.wchd.org/faq.cfm?cat=315

Department of Human Services – Illinois
Services to help families meet basic needs and to become self-sufficient. Links to Early intervention services for children up to three years of age are included in the second and third link below.
www.dhs.state.il.us/page.aspx

www.state.il.us/agency/dhs/earlyint/eipdfs/ei01cfcdir.pdf

www.state.il.us/agency/dhs/earlyint/earlyint.html

Division of Specialized Services for Children
The link below provides an information library and resources for families and children with special health care needs.
http://dscc.uic.edu/
The DSCC Facebook page is always being updated with resources, new products and local events: https://www.facebook.com/dscc.uic.edu

This link brings you to a pamphlet entitled “Planning for your Teenager’s Future” for families of teenagers with special needs.
internet.dscc.uic.edu/forms/transition.pdf


Research Program

redcap_clear_high_resResearch Program: Starting in 2013, Almost Home Kids entered into a formal collaboration with a research team from the University of Chicago.  This team has initiated a research protocol, having received approval by the University of Chicago’s Institutional Review Board [protocol number IRB13-1082], which is attempting to quantify important aspects of the experiences of the caregivers for the children served in the Transition Program.  This project is led by Sarah Sobotka, MD, MSCP, and is entitled, “Describing the caregiver experience of transitioning home with new disability/medical technology.”

Caregivers who consent to participate in the study complete a survey created by Dr. Sobotka and her team at several points related to the time that their child is served at AHK.  They complete the survey first within a week of admission to AHK, then after 2 months, 6 months and 12 months of their child being discharged from AHK.  One portion of this survey includes questions measuring caregiver stress that have been modified from prior validated instruments.  Changes in this portion of the survey will be one of the primary outcome measures for the study.

Additionally, all parents who utilize Respite Care Services are asked to complete a separate survey (not part of the research study) on their self-reported stress levels.

The datasets from both of these surveys will be used to identify trends, provide additional services and monitor the effectiveness of our clinical programming.