Tuesday, November 11, 2014

Illinois Resources

Some of the following resources are restricted to certain areas of Illinois.  Some of the following resources are outside of state funding organizations, with eligibility for IL families.  Please check the websites for more information. 

Ambucs: funding for adaptive bikes, through AmTryke Wish List) http://www.ambucs.org/scholars/

Arc of Illinois: Conference stipends, family support network, family to family health center, Illinois lifespan. http://www.thearcofil.org/

Aubrey Rose Foundation: financial assistance for medical bills not covered by insurance. http://www.aubreyrose.org/

Believe in Tomorrow: educational/recreational and supportive services, helping families reconnect. Hands on Adventures, and hospital and respite housing programs. http://www.believeintomorrow.org/about.html

Blind Citizens: Assistive Technology Fund (ATF) provides funds to cover 50% of the retail price of adaptive devices or software. www.blindcitizens.org/assistive_tech.htm
Camp New Hope:  A family retreat resort in NC.

Cerner- First Hand Foundation: funding for treatment, adaptive equipment, vehicle modifications, etc. not covered by insurance. https://www.cerner.com/About_Cerner/Community_Impact/

Chai Lifeline: trips, hospital stay help, camps, and counseling. http://www.chailifeline.org/

Chicago Lighthouse: advocating, independent living resources, deaf/blind program. http://chicagolighthouse.org/

Children's Charity Fund: funding for adaptive equipment  or education (0-18 years old) http://www.childrenscharityfund.org/

Different IZ Good: Gifts iPhone, iPad, or iPod touches to speech impaired, minimally verbal, or non-verbal persons.  http://differentizgood.org/gift-a-voice/

Different Needz Foundation: grants for medical equipment or services. http://www.differentneedzfoundation.org/

Disabled Children's Relief Fund: assistive technology, vision devices, hearing devices, therapies, etc. http://www.ok.gov/abletech/documents/Sec%204%20Disabled%20Children's%20Relief%20Fund.pdf

Dream Catchers, USA: Outdoor/nature wish organization (fishing/hunting). http://www.dreamcatchersusa.org/

Division of Rehabilitative Services (DRS): Home based support, and home livingprogram assistance. http://www.dhs.state.il.us/page.aspx?item=29736

Faith’s Hope Foundation: Family assistance for expenses for long term hospital stays (food/utilities/car payment/lodging/house payment/property tax/ etc. http://www.faithshopefoundation.org/

First Hand: Displacement assistance, and specialty services or equipment.  Treatments, Equipment, Displacement, vehicle modifications. https://applications.cerner.com/firsthand/

First Transit: Medicaid paid for transportation to/from dr appts.  Also has a program where parents become approved transporters and are reimbursed for mileage. http://www.firsttransit.com/About-Us

Friends of Man: Equipment, Prosthetics, Wheelchairs, mobility equipment/vehicle modifications. http://www.friendsofman.org/ReferOutsideCO.php

Gia Nicole Angel Foundation: funding of specialty item(s) for low income/single parent families.  http://www.giafoundation.com/extensions

Gigi's Playhouse: For Trisomy 21 only.  Events and play dates for kiddos with T21. http://gigisplayhouse.org/

Gracie’s Hope: Funding for HBOT and other treatments/therapies. http://www.gracieshopehyperbarics.com/application/

Grottoes of North America Humanitarian Foundation: Helps cover the costs of dental treatment, including hospital and anesthesia costs when needed, for children with cerebral palsy, muscular dystrophy (and related neuromuscular disorders), organ transplant recipients or those with mental retardation. http://www.hfgrotto.org/programs/the-dental-program/

Hands to Angels: Financial assistance for families facing a rare condition (like Trisomy). http://www.handstoangels.org/index.html

The Hearing impaired Kids Endowment Fund: grants for hearing aids and assistive devices. http://www.thehikefund.org/Application/ApplicationFormsPortal.html

Helping from heaven, the Lexi Kazian Foundation: Lexi's Closet (equipment loan center), funding for adaptive/therapy equipment, and free events. http://www.helpingfromheaven.org/

HIPP progam: State pays insurance deductibles and/or COBRA if elegible for private insurance and on Medicaid. http://www.dhs.state.il.us/page.aspx?item=19239

Illinois Assistive Technology: Assistive technology loan center. http://www.iltech.org/

Illinois Elk's Children's Care Corporation: funding for adaptive equipment, bikes, and services. http://www.illinois-elks.org/ccc/

Internet essentials: $9.95 monthly for home internet for families with kids who qualify for/receive free school lunches. http://www.internetessentials.com/

The Kids Equipment Network:  Funding help for equipment. http://www.tken.org/

Kids on the Go: mobility program through variety- funding for adaptive sports, bikes, and wheelchairs. http://www.varietyofillinois.org/kidsonthego/

Kids Wish Network: Wish granting, hero of the month, toys/clothes/necessities tour, holiday of hope gifts, funeral assistance. http://kidswishnetwork.org/programs/

Kya’s Krusade: Adaptive equipment and therapeutic services funding: http://www.kyaskrusade.org/info/programs-and-services/financial-assistance-program/

The Lindsay Foundation: Financial assistance for seating and transportation equipment, therapies, medical procedures, medical supplies, communicative devices (excludes iPads), and rehabilitative equipment. http://www.lindsayfoundation.org/about.html

Make a Wish: Chicago has one of the biggest/wealthiest chapters of Make a Wish!  If your SN child is considered terminally ill or has a life threatening condition, he/she could qualify for a wish!  Wishes are in 4 categories; to be someone, to meet someone, to go somewhere, or to have something.  http://illinois.wish.org/

Miracle Ear Foundation: Hearing aids for low income after exhausting all resources. http://www.miracle-ear.com/en-us/miracle-ear-foundation/eligibility

Molly Bear Foundation: Supplemental financial assistance for families facing a Trisomy 18 diagnosis. http://www.mollybear.org/

The Morgan Project: Small grants, and gently used disability equipment. http://www.themorganproject.org/

Northern Illinois Special Recreation (NISRA): Year round recreational activities for the disabled. http://www.nisra.org/

Normal Moments: After enrollment, you can ask for a "David".  Normal moments will send volunteers, or hired help for around the house needs (cooking, cleaning, yard work, etc).  They also give Thanksgiving and Christmas dinners to enrolled families, and connect your family with donators for Christmas gifts. http://www.normalmoments.org/

Options & Advocacy: Early Intervention, sibshops, apply for PUNS, life management program. http://www.optionsandadvocacy.org/

The Lindsay Foundation: Financial assistance for seating and transportation equipment, therapies, medical procedures, medical supplies, communicative devices (excludes iPads), and rehabilitative equipment. http://www.lindsayfoundation.org/about.html

Parker Lee Project: Medical supplies, including diapers.  http://www.theparkerleeproject.org/

Parker’s Purpose: Monetary grant up to $1,000. http://parkerspurpose.net/index.php?page=application-for-assistance

Pass It On Center: classifieds for used assistive technology http://passitoncenter.org/locations/SearchResults.aspx

The Prayer Child Foundation: Prayers and other help for children with syndromes or illnesses (emotional, physical, etc) with no fault of their own.  http://prayerchild.org/

Project Reach: Illinois Deaf Blind Services: Technical assistance, training, information, and family support.  They also give away iPads when available. http://www.philiprockcenter.org/

PUNS: A lottery system for a waiver program that gives your family a lump sum of money to spend on nursing, medical equipment, etc. http://www.thearcofil.org/applying-for-services-and-puns

ReachOut Wireless:  Free cell phone/minutes if low income qualified.  https://www.reachoutmobile.com/

Save the Kid Fund, Inc: medical treatment funding, grants for; medications, handicap aids, adaptive bikes, diapers, leg braces, etc. http://www.savethekid.org/ http://www.savethekid.org/

Small Steps in Speech:  Funding for supplemental therapy and treatments for children. http://differentizgood.org/gift-a-voice/

Songs of Love Foundation: a (free) personalized song for children and teens. http://www.songsoflove.org/

Social Security Insurance (SSI): supplemental federal funding. http://www.ssa.gov/pgm/ssi.htm  

Special Needs Assistance Program – Modest grants for medical and therapeutic equipment, not covered by health insurance or in the case of no health insurance, throughout the United States, from birth to age 22. www.snap4kids.org
Special Spaces: Room makeovers.  http://www.specialspaceschicagoland.org/

Starlight Foundation: Hosts Great Escapes, and gives donated tickets to events in the area, for enrolled, special needs families. http://www.starlight.org/

State Waiver programs: There are a various of different waiver in IL. (will update later)

Sunshine Foundation: Wishes for 3-18 y/o. http://www.sunshinefoundation.org/

Thumbuddy Special: funding for adaptive equipment. http://www.thumbuddyspecial.org/

United Healthcare Children's Foundation: funding for adaptive equipment, hearing aids, therapies, etc (quality of life and improvement opportunities) up to $5,000 per year, with a $7,500 lifetime max per child.  http://www.uhccf.org/about/

Used Home Medical Equipment: database of adaptive equipment for sale (search by zipcode) http://usedhme.com/

Western Wishes Foundation USA, Inc: Western themed wishes (rodeo, country concerts, riding horses, etc) http://www.westernwishes.org/

Variety- The Children's Charity of Illinois: funding for adaptive equipment, van and home lifts, adaptive bicycles, and stair lifts. http://www.varietyofillinois.org/

Sunday, November 9, 2014

Transitioning to Home Care, Equipment and Supplies

Transitioning to Home Care series

While it is exciting to be leaving the hospital for the first time with your complex child, it can be overwhelming.  One of the stressors is making sure you have all the equipment and supplies needed, for home care.  These are lists of commonly used equipment and supplies for children, including those with any/all of the following: Tracheostomy, Feeding tube, Vent dependent.  The hospital social worker or discharge co-ordinator can help set you up with a DME (durable medical equipment supplier).  For personal recommendations of a DME near you, try asking in your local fb groups.  You will need physician scripts for all home care equipment and supplies, which the co-ordinator can supply to the DME.  Your home care physician should supply the DME with future equipment/supply orders. 

Home Care Equipment:

Air Compressor~ This is to support the function of the Fisher Paykel humidification system. Specific supplies needed to operate: o2 tubing, filter(s). 

Apnea monitor~ Machine used to monitor apnea (pause in breathing) events.  Supplies needed to operate: mask, sensors

Co2 monitor~ Positive air pressure usually used for sleep apnea or airway obstruction.  Supplies needed to operate: trach connector, sensor, mask. 

Concentrator~ A concentrator is oxygen that is continuously being "made" by pulling from the surrounding air.  This is used to either support the Fisher Paykel system, or can be used individually for 02 support in the home. Specific supplies needed to operate: o2 tubing, filter(s). 

Cough Assist~ 

CPAP machine~ Supplies needed to operate: mask, travel bag, car charger, 

CPT wand~

Humidified air system~ called the Fisher Paykel.  This system is used to humidify the tracheostomy airway.  While our noses have hair (filters) to keep humidity in our upper airway, our trachea (mid airway) does not have a natural filter to keep humidity in the airway.  The Fisher Paykel system supplies humidity to keep the airway from drying up, which can cause mucus plugs and/or collapsing of the airway.  Specific supplies needed to operate: heated (coiled) tubing kit, humidified chamber, o2 tubing, sterile o2 bags. 

Mechanical lift (and slings) 

Nebulizer~ a device that delivers breathing treatment medications. Specific supplies needed to operate: nebulizer kit, filter(s).

Oxygen (02) tanks~ portable tanks used for transit, or in the home when a vent and/or humidification is not needed for moments in time. It is good to have o2 tanks for back up in the home as well (for when power goes out).  Tanks come in many sizes, where the higher the alphabetical number, the bigger the tank (more oxygen it holds).  The size "H" tank is too large to use in transit, but hold enough oxygen for back up supply at home.  Another o2 tank option is liquid o2.  This must be prescribed specifically by the physician, and carries extra risks in home care use.  Specific supplies needed to operate: o2 tubing, on/off key, regulator, portable cart and/or wheelchair tank holder.  

Oxygen analyzer~ gives accurate reading of percentage of o2 output. 

Portable concentrator~ a rechargeable concentrator that holds o2.  This can be used in home for emergency backup, or on an airplane (02 tanks are not allowed on the flights).  Specific supplies needed to operate: o2 tubing, battery, wall plug, car charger. 

Pulse oximeter (pulse ox)~ There are two types of pulse ox machines.   Portable (can take with you outside of the home) and Stationary (stays at bedside).  Depending on the pulse oximeter, you are able to monitor oxygen saturations (o2 levels) in the blood, heart rate (some with visual rythm), and/or Co2 levels. The Pediatrician, Cardiologist, and/or the Pulmonology specialist can write the script for this device(s). Specific supplies needed to operate: pulse ox sensors. 

Scale~ If the patient's in/outs are being measured, you will need a scale to weigh diapers/nappers/briefs.  

Shake Vest~ 

Suction machine~ There are two types of suction machines.  Portable (can take with you outside the home) and Stationary (stays at bedside).  The suction (sx) machine is used to clear the airway of secrections (saliva/drooling).  The pediatrician or PCP (primary care physician) can write the script for this device(s).  Specific supplies needed to operate: filter, sx canister, sx tubing, car charger, wall charger, extra battery, sx catheters (oral and/or deep suctioning for trach).

Ventilator (vent)~ Used for dependent breathing support.  Specific supplies needed to operate: white circuit tubing, swivel trach adapter, battery, car charger, bag (for in travel). 

Home Care Supplies: 

Trach/vent care
Trach ties
Surgi lube (or KY jelly)
Trach cleaning kits
HME's (heat and moisture exchangers)
Gauze (for stoma), split 2X2 
Medical tape (to secure split gauze)
Trach collar (mask) 
o2 tubing
Heated/coiled tubing 
Humidfied Chambers (for Fisher Paykel/vent systems)
Vent connector pieces
Scissors (to cut trach ties) 

Feedings/GI care
Feeding bags
Ferrell bags
Mic Key or Mini buttons
Gtube extensions
Syringes (for venting and flushes) 
Chux pads
Colostomy bag
Double stick Colostomy tape
Tape measure (for girth) 

Medication care
Crushing syringes/Pill crusher
Pill cutter
Nursing drug book

General Care
Cotton tipped applicators (sterile qtips) 
Saline bullets
Medical tape (paper, transparent, or silk)
Distilled water
Face masks (for care takers)
Protective gowns (for care takers)
Adhesive remover pads
Blood pressure cuff/kit
Extra batteries for machines 
Hydrogen Peroxide 
Sterile Gloves

Respiratory Care
Suction tubing
Suction filters
Nebulizer filters
Little Suckers (with or without covers), Nasal suckers, yankauers
Suction catheters (for trach suctioning) (can be sleeved or un-sleeved)
Pulse Oximeter sensors
Sterile water bags for the Fisher Paykel system
Nebulizer kits
Ambu bag
Passi Muir valve
Posey wraps
O2 tanks
Generator (for back up)

Urinary Care
Urinary catheters 
Foley/indwelling with a small bag 
Diaper liners

Wound Care
Sanitary napkins (to absorb blood)
Tega derm
Abdominal pads 

Pharmaceutical items
Alcohol wipes
Heparin syringes/flushes
Gauged needles (for PICC lines, and Ports)
Glucose monitor, needles, and strips
Chest port surgical kits
IV supplies (caps, butterfly needles, surgical kit) 
Ketone strips
Sterile water