Project Shui for Tay-Sachs


CarePlan-Medicaid Waiver

Sample Care Plan for DMA 6 - Katie Beckett Medicaid appliction

Contents
*Video or Pictures of Tay-Sachs

Project Shui Home Page

   *
Welcome From Shui
   How Close are we to a Cure?
   *Rachaeli's Friends
   Sign up for Updates
*Bar Mitzvah Video Invite
What is Project Shui?

  
Thank You From Shui
   Internet Ads&Marketing

What is Shavuot?
  
Shavuot & Shui's Sister

What is Tay-Sachs?
  
Tay-Sachs Diagnosis:

      Part I

      Part II

   Genetics Made Fun
      *Lysosomes The Movie
      *Genetics 101 Video
     
Narrated by Alec Baldwin
   Genetics 101 Article

*Inspirational Videos

  
*Beautiful Faces of Lysosomal

  
*Tay-Sachs Talk
   *Connor Hopf Cure Tay-Sachs
   *2010 Faces of Tay-Sachs
  
*My Soul Sister-Molly Grace
  
*Our Star Dakota
   *Rachaeli's Song of Love
   *Elise-A Child Living with Tay-Sachs
   *Last Laugh
   *Meet Gavin

Tay-Sachs in the Media
   *
Glee Sectionals
   *Grey's Anatomy Sweet Surrender
   *Law & Order SVU MERCY
   *
21 Below Documentary
Legal & Financial Issues

   What is Wrongful Life?
   Right to Live in the United Kingdom
   How to Pay Medical Bills?
   Social Security Disability
   CHIPRA-Insurance for Kids
   Medicaid Waiver Programs
   Katie Beckett Medicaid
   Who is Katie Beckett?
 
 Why We Need Katie Beckett Waiver?

  
Eligibility for Katie Beckett
   Katie Beckett in Georgia
  
Katie Beckett's Going Home
   (from People Magazine 1981)

Treatment or Cure
  
Canavan Pioneers
   *Gene Therapy
   Jacob Sheep Sensation
   Article in Forward-Jacob Sheep
   *Stem Cell Transplants
   Enzyme Replacement
   Substrate Inhibitors
   Should I Try Zavesca?
   Letter for Insurance 
      Approval for Zavesca
   Chaperone Therapy

In-Home Medical Care
  
Home Health Care
   Respiratory/Secretions
   Coping Strategies
  
Coping with Humor w/ Shui's Dad
Rachaeli's Story
  
Shocked by Tay-Sachs Article
The Project Shui Family
  
Mommy's Online Journal
   Abba's Online Journal
   Shui's Fun Pages

Guestbook
Sitemap



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This Care Plan template was provided to me by a social worker when Rachaeli was one year old.  A social worker and an experienced nurse helped me with the wording and the details necessary for a thorough care plan. It may seem overly detailed, but the goal is to provide the Medicaid reviewers with all the skilled and unskilled tasks a special needs child may need throughout the day and night. For the Katie Beckett waiver, medical necessity determines eligibility, not income, so detailing the medical needs is very important.


Care Plan for DMA6: March 2011
Eliana Rachael Fier 
address
address
D.O.B. xxxxxxx
Age: 8 years & 4 months


Life Goal: To provide Eliana with community-based care in the least restrictive environment, with opportunities for maximal social interaction with the typical community population.


Social Goal: In pursuit of the stated goal, Eliana will reside in the home of her parents, Eric and Nicole Fier, who will be her primary providers.


Educational Goal: To live long enough to be able to benefit from educational stimulation.


Medical Goal: To minimize further deterioration of Eliana’s respiratory status, neuromuscular status, growth, and development.  Eliana is currently being treated and monitored by the following physicians:


* Pediatrician: Xxxxx Xxxxxx, MD
Address
Phone number


Specified Need: Monitor growth patterns, nutrition, immunizations; coordinate care with specialists; treat childhood diseases

Goal: To ensure that Eliana is maintaining weight and height for a child her age, and is free of childhood diseases

Treatment Plan: Eliana will be seen regularly to monitor growth and development, receive immunizations, and diagnose and treat illness.


* Pediatric Pulmonologist: Xxxxx Xxxxx, MD 
Address
Phone number

Specified Need:
  • Monitor respiratory status related to reactive airway/ wheezing, hypotonia, and high aspiration/suffocation risk. 
  • Evaluate efficacy of pulmonary medication regimen (Xopenex, Atrovent, Pulmicort, Singulair, Scopolamine).  
  • Continue interventions to minimize risk of death by aspiration/pneumonia, including: 
  1. Q3hour nebulizer treatments, 
  2. chest physical therapy, 
  3. the Vest, 
  4. Cough Assist, 
  5. oxygen as needed, 
  6. nasal and oral suctioning as needed around the clock.  

Goal:
  • To slow the deterioration in respiratory status as long as possible using as few medications and interventions as medically necessary. 
  • Try to maintain maximal comfort for Eliana in the face of progressive respiratory failure.

Treatment Plan: Pulmonary re-evaluations, laboratory monitoring as needed, assessment of reactive airway illness and GE reflux, and monitoring of blood oxygenation. Follow-up of in-home nebulizer treatments, suctioning, chest PT with the VEST, and airway clearance with the Cough Assist machine.

Medications
  • Xopenex via nebulizer every 3 hrs & PRN
  • Atrovent via nebulizer every 12 hrs & PRN
  • Singulair via PEG once daily
  • Pulmicort via nebulizer every 12 hrs
  • Scopolamine Transdermal patch every 48 hours





*
Pediatric Gastroenterology: Xxxxx Xxxxx, MD
Address
Phone number

Specified Need: Monitor status of
  • reflux, 
  • aspiration, 
  • PEG feedings, 
  • intake and output, 
  • nutritional status, 
  • GI bleeding, 
  • gut motility and 
  • constipation.

Goal:
  • PEG tube feeds will be well tolerated and sufficient to help maintain adequate growth and comfort. 
  • Aspiration will be prevented. 
  • Reflux will be kept in remission. 
  • GI Bleeding will remain in remission.  
  • GI motility and constipation will improve.

Treatment Plan: GI physical examinations as needed with monitoring of PEG status, constipation, reflux, nutrition, and lab work. 

Medications:
  • Peptamen Junior Enteral Feedings every 6 hours with 2tsp yogurt
  • Prevacid via PEG twice daily
  • Reglan via PEG every 6 hours
  • Benadryl via PEG every 6 hours
  • Miralax via PEG every day as needed
  • Polyvisol vitamin drops via PEG every day
  • Maalox via PEG twice a day and as needed


* Pediatric Ophthalmologist:   Xxxxx Xxxxx, MD
Address
Phone number


Specific Need:  
  • Regular eye examinations.  
  • Follow up on corneal abrasions and delayed healing due to chronic dry eyes and limited blinking.  
  • Outpatient eye procedures to keep eye partially closed. 
  • S/P left eye surgery in October 2009.  
  • Now - need for right eye assessment and possible surgery.

Goal:  Healing of corneal abrasion, prevention of future abrasions and infections.

Treatment Plan:  
  • Appointment March 2011 to assess the need for right eye surgery.  
  • Follow up on left eye in June 2011. 
  • Hourly application of artificial tears to both eyes; 
  • lacrilube ointment to both eyes at least 3 times a day.



*
Pediatric Neurologist: Xxxxx Xxxxx, MD
Address
Phone number

Specified Need: Monitor neurological/neuromuscular status, including seizure activity, myoclonus, and muscle spasms

Goal: To slow the deterioration in neurological status, treat seizures, and try to maintain maximal comfort for Eliana in the face of neurodegenerative decline.

Treatment Plan: Follow up as needed; anti-seizure and muscle relaxant medications. 

Medications:  
  • Klonopin 1.0 mg 4X/day
  • Lamictal 100 mg at 12pm and 75mg at 12am
  • Baclofen 2.5mg 2X/day & 5.0mg 1X/day
  • Zavesca 100mg 3X/day
  • Diastat 10mg PRN 


* Pediatric Endocrinology:   Xxxxx Xxxxx, MD
Address
Phone number


Specified Need:  Monitor endocrine status related to precocious puberty

Goal:  Halt or slow changes related to puberty if treatment acceptable to patient and family.  Provide education and treatment options.

Treatment Plan:  Follow up as needed; laboratory tests as indicated; discussion of treatment options with family; treat if indicated.



Daily In-Home Medical Needs


In-Home Care by Home Health Care Nurse and Primary Caregivers:


* Monitor intake and output.
* Check for residual feedings every 6 hours before medications are given
* Gastric venting every 6 hours before medications, and again after Cough Assist treatments, and as needed
* Assess breathing and respiratory status around the clock.
* Monitor oxygen saturations every 4-6 hours if stable, and around the clock if unstable
* Monitor temperature and other vital signs every shift if stable, and every hour if unstable
* Monitor for seizures and provide seizure precautions around the clock.
* Minimize and monitor hypersensitivity to touch and sudden movements by providing a calm, soothing, and quiet environment.
* Dispense PEG feeds via Kangaroo pump every 6 hours, each feed lasting 1-2 hours 
* Dispense free water via PEG after feeds every 6 hours 
* Monitor for reflux and vomiting.  Reposition head and body as indicated
* Clean Tube feeding bags and tubing every 6 hours after each feeding
* Prepare and Dispense medications via PEG:
  •        Prevacid twice a day (6am & 6pm)
  •        Singulair once a day (12 am)
  •        Klonopin 4 times a day (6-12-6-12)
  •        Lamictal 2 times a day (12am & 12 pm)
  •        Baclofen 3 times a day (6a, 12p, 6p)
  •        Reglan 4 times a day (6-12-6-12)
  •        Benadryl 4 times a day (6-12-6-12)
  •        Miralax once a day (9am)
  •        Zavesca 3 times a day (12a, 6p, 12p)
  •        Maalox 1 time a day (12pm)
  •        Polyvisol one time a day (9am)
  •        Ambrotose one time a day (9am)
  •        Polyvisol with Iron one time a day (9am)
* Dispense and administer medications via Nebulizer :
  •        Xopenex every 3 hours & PRN (12-3-6-9-12-3-6-9)
  •        Atrovent every 12 hours & PRN (6am & 6pm)
  •        Pulmicort every 12 hours (9am & 9pm)
* Brush teeth and oral mucosa after each Pulmicort treatment twice a day
* Provide oral stimulation with toothettes, tooth brushes
* Provide manual Chest Physical Therapy (CPT) after each Nebulizer treatment as needed
* Provide CPT using the VEST every 12 hours and PRN
* Provide ongoing nasopharyngeal suctioning of secretions throughout the day as needed and after nebulizer/chest PT treatments.
* Provide airway clearance with the Cough Assist machine at least 4 times a day before meals
* Provide oxygen via nasal cannula as needed
* Clean Suctioning tubing after each suctioning throughout the day
* Clean suctioning equipment daily and sterilize
* Clean nebulizer equipment after each treatment and sterilize
* Clean Cough Assist face mask after each use and sterilize
* Clean syringes after each use
* Tub bath or bed bath each day for hygiene
* Provide skin care with moisturizer one to two times a day
* Provide physical therapy exercises as per PT instruction to increase range of motion, prevent contractures, increase strength, for approximately 30 – 60 minutes each shift.  Exercises include range of motion, stretching, sitting supported, and propped on all fours as tolerated.  
* Provide positioning in kid kart seat 
* Treat ankle contractures with AFO’s for 2-3 hour intervals
* Treat wrist contractures with wrist splints
* Rotate/change positioning during sleep to improve lung function and decrease risk of pneumonia, every 2 hours.
* Place in Trendelenberg position as needed to allow for postural drainage of lung secretions.
* Place artificial tears into both eyes every 2 hours.
* Place Lacrilube eye ointment into each eye 4 times a day.
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