21-year-old San Diego Community College student with severe muscular dystrophy fights Brown adminstration for right to remain in his own home with family

CDCAN DISABILITY RIGHTS REPORT 
CALIFORNIA DISABILITY COMMUNITY ACTION NETWORK
#175-2012 – December 4, 2012 – Tuesday Night

California Budget Crisis:

20121204 – Pablo Carranza v Toby Douglas Dept of Health Care Services (24 Pages – Filed Dec 04 2012).pdf

21 YEAR OLD SAN DIEGO COMMUNITY COLLEGE STUDENT WITH SEVERE MUSCULAR DYSTROPHY FIGHTS BROWN ADMINISTRATION FOR RIGHT TO REMAIN IN HIS OWN HOME WITH FAMILY

  • Disability Rights California Files Lawsuit in Federal Court on Behalf of Pablo Carranza to Require State to Continue to Provide Level of Medi-Cal Funded Supports
  • Carranza Is A Big Denver Broncos Fan – Wants To Live Life As “Any Normal Person”
  • Older Brother Raul Jr. Age 22 Also Has Muscular Dystrophy and Spoke At Several San Diego Rallies Protesting IHSS, Medi-Cal Budget Cuts Earlier This Year – Faced Similar Cuts In Medi-Cal Hours

 

SACRAMENTO, CA (CDCAN)  [Last updated 12/04/2012  11:30 PM] – Public advocacy attorneys on behalf of Pablo Carranza, a 21 year part-time community college student who has severe muscular dystrophy, filed a lawsuit in Federal district court in Sacramento on Tuesday (December 4th) against the Brown Administration, asking the court to issue an order that will require the State to continue to provide a level of Medi-Cal skilled nursing services that will allow Carranza [pictured above left in his bedroom] to remain in his home with his mother and older brother in San Diego. The State was moving to cut his nursing service hours when Carranza turned 21 years old in September – though that action is temporarily on hold due to a fair hearing decision allowing him to receive the same level of supports for the time being. 

The lawsuit, “Pablo Carranza v. Toby Douglas”, was filed in federal district court in Sacramento on December 4, 2012 and seeks a court order that Carranza’s nursing hours in his home under a special Medi-Cal program called the Nursing Facility/Acute Hospital Waiver,  continue at the same existing level without interruption. 

Unlike other recent lawsuits over the years dealing with stopping Medi-Cal budget reductions and program eliminations enacted by the State, this lawsuit is focused on whether or not the State is properly administering a particular Medi-Cal program impacting a specific individual. If the court decides to act and issues an order, it could have impact on many other persons who may have similar situations within the Medi-Cal program, and specifically those persons receiving services under the Nursing Facility/Acute Hospital Waiver.   

Douglas, who was named specifically in the lawsuit representing the Brown Administration, is the director of the Department of Health Care Services, the agency that oversees the State’s federally funded Medicaid program, called “Medi-Cal” in California. 

A copy of the 24 page lawsuit is attached to this CDCAN Report saved as a pdf document file (that should allow people who are blind or sight impaired to read it using a screen reading device) titled “20121204 – Pablo Carranza v Toby Douglas Dept of Health Care Services (24 Pages – Filed Dec 04 2012).pdf”

The Brown Administration had no official comment on the filing of the lawsuit, though attorneys for the Department of Health Care Services will be responding. 

The State has previously said that requirements under the Nursing Facility/Acute Hospital Waiver – the Medi-Cal program that the bulk of Carranza’s services are program through – were very clear regarding cost caps, service levels and eligibility. 

That waiver is a special Medicaid program approved by the federal government to allow California to provide an array of nursing and other services – in addition to In-Home Supportive Services – for a person with significant physical disabilities and health needs to remain in their own home. 

LAWSUIT CONTENDS STATE HAS OTHER OPTIONS

The lawsuit filed on behalf of Pablo Carranza claims that the Brown Administration has other options but “…have chosen to administer the [Nursing Facility/Acute Hospital] waiver in such a way as to discriminate against Pablo and to place him at risk of institutional placement, with life threatening consequences”.

“The State has capped home nursing care for adults such as Pablo at $180,000 per year, which is at least $90,000 below the actual cost of equivalent care in a hospital or sub-acute facility,” said Debra Marley, Associate Managing Attorney for the San Diego office of Disability Rights California and lead counsel for Pablo Carranza, adding that “This funding shortfall is biased against home-based care and violates the anti-discrimination mandate in the Americans with Disabilities Act that people with disabilities be served ‘in the most integrated setting appropriate to their needs.”

Co-Counsel Robert Newman of the Western Center for Law and Poverty noted that the Brown Administration “…does not seem to understand that it will be cheaper to continue Pablo’s current services at home rather than force him into a medical facility. There is an easy fix here – the state has both the flexibility to modify state Medi-Cal rules to provide the nursing hours that Pablo needs, and the duty to do so under federal law.”

CARRANZA WANTS TO LIVE LIFE AS “ANY NORMAL PERSON”

Pablo Carranza said in a statement released on Tuesday that “…I want to live with my family because they help me pursue my goal to become a productive person. They always help me with every task that I need to do. I also need the emotional and physical support they always provide me. My family always treats me very good and they provide me with everything that I need because of my condition. They make me feel like a normal person.”

Though Carranza is quite aware of the extent of his significant health needs and disabilities, he expressed the optimism and hopes of any young person starting out in life, saying that “…like most people my age, I want to explore the world around me by going out, meeting new people, going to college, having a career, and I really just want to have a chance to have a normal life.”

But he said none of that is possible if State of California prevails in reducing his Medi-Cal funded services that allows him to remain safely in his own home with his mother and older brother. 

For Carranza’s mother, Leticia Martinez, the Medi-Cal program gave her family both comfort through the help of skilled nurses so that they were able to keep their family together at home, and now deep fears for the future because “…we are all scared that Pablo will be forced into a hospital or other institution where he will not be strong enough to survive. I hope that the Court will save my son.”

His older brother Raul Carranza Jr, a disabiloity rights advocate, age 22, [pictured left at rally in March 2012] who also has severe muscular dystrophy and faced similar loss of Medi-Cal level of services last year, appeared and spoke at several rallies in San Diego protesting major budget cuts to In-Home Supportive Services, Medi-Cal and other health and human services earlier this year. 

Various news reports and videos (including Pablo Carranza) can be found on his website at: http://raulcarranza.org/category/media/

ISSUES RAISED IN LAWSUIT

  • Pablo Carranza can only move one finger independently, but he uses it all day long to type assignments for his online community college courses or to tweet encouragement to his favorite team, the Denver Broncos, whose posters adorn the walls of his bedroom.
  • Because muscular dystrophy has left him unable even to breathe or swallow on his own, Carranza requires skilled nursing care to monitor his ventilator, feeding tube and oxygen levels, to clear fluids from his lungs and tracheotomy tube, to transfer him from bed to wheelchair and back, and to bathe and reposition him.
  • While this kind of 24-hour care is often provided in a hospital or sub-acute medical care facility, Carranza has been able to remain at home with his family, with needed one-to-one levels of supports and services from Medi-Cal under a special program called the Medi-Cal Nursing Facility/Acute Hospital Waiver (previously known as the Nursing Facility A/B Waiver). 
  • Under that waiver, that level of support was provided to him since he was 14 years old because the State at the time determined it was better for him to remain in his own home with his family – and that the costs were significantly less than placing him in a health facility or similar institution. 
  • The lawsuit contends that the Brown Administration – specifically the Department of Health Care Services (the state agency that oversees statewide the Medi-Cal program) have cut Carranza’s nursing hours solely due to the fact that he turned 21 years of age and was done without medical justification.
  • The lawsuit notes that Carranza’s “…medical condition has not improved; his need for in-home nursing has not decreased” simply because he turned 21 years old in September and that the Department of Health Care Services placed “…an arbitrary cost-cap on home and community based services at the Subacute level of care” under the Nursing Facility/Acute Hospital Waiver, which the lawsuit claims “…is far less than the actual institutional rate for a Subacute facility”.
  • Carranza’s lawsuit contends that the Brown Administration – and specifically the Department of Health Care Services has “…great flexibility and discretion in their administration” of the Nursing Facility/Acute Hospital Waiver and that they have the authority “…to make modifications to ensure that Medi-Cal recipients such as Pablo receive sufficient and medically necessary in-home care to avoid institutional placement and are not subjected to abrupt reductions in their home care services”.
  • The lawsuit further contends that Pablo Carranza’s needs can be “reasonably accommodated” by the Department of Health Care Services by continuing to provide him with in-home nursing up to the rate that the State would actually pay “…if Pablo were to be admitted to a Subacute facility; and/or modifying any of its Home and Community Based Waivers to permit Pablo to receive the nursing care hours that he requires and that are physician ordered”.
  • The lawsuit suggests that the Brown Administration “have many options” to administer the Nursing Facility/Acute Hospital Waiver so “as not to create a bias towards institutional placements” including increasing the cost-cap for the Subacute level of care of the Nursing Facility/Acute Hospital Waiver to a level that is equal to amount actually paid to Subacute facilities.  
  • The lawsuit also suggests that the Brown Administration could also create a provision in the existing waiver to allow youth such as Pablo Carranza who turn age 21, to continue with the same number of nursing hours.

 

FOR FURTHER INFORMATION

 

LEGAL TEAM WHO FILED SUIT ON BEHALF OF CARRANZA

The following is the contact information of the legal team – including lead counsel – who filed the lawsuit on December 4th, on behalf of Pablo Carranza:

Lead Counsels:

Debra Marley and Maria Iriarte

Disability Rights California (DRC)

1111 Sixth Avenue, Suite 200

San Diego, CA 92101

Office Phone: 619-239-7861

FAX: 619-239-7906

EMAIL:

debra.marley@disabilityrightsca.org

maria.iriarte@disabilityrightsca.org

Other Counsels for Pablo Carranza:

Melinda Bird and Jackie Coleman

Disability Rights California

1831 K Street

Sacramento, CA 95811

Office Phone: 916-504-5800

FAX: 916-504-5802

EMAIL:

melinda.bird@disabilityrightsca.org

jackie.coleman@disabilityrightsca.org

Robert D. Newman and Mona Tawatao

Western Center on Law & Poverty

3701 Wilshire Street, Suite 208

Los Angeles, California 90010

Office Phone:  213-487-7211

FAX:  213-487-0242

EMAIL:

rnewman@wclp.org

mtawatao@wclp.org

BACKGROUND OF NURSING FACILITY/ACUTE HOSPITAL WAIVER

  • The Nursing Facility A/B Waiver was renamed the Nursing Facility/Acute Hospital Waiver effective January 1, 2007.  It was renewed for another four year period (from January 1, 2012 through December 31, 2016). 
  • This waiver combines the following three prior Home and Community-Based Waivers: (1) NF A/B Waiver; (2) Nursing Facility Subacute (NF SA); and the In-Home Medical Care (IHMC) Waiver. 
  • According to the Department of Health Care Services, the purpose of the Home and Community-Based Services NF/AH [Nursing Facility/Acute Hospital] Waiver is to provide Medi-Cal recipients with long-term medical conditions, who met the acute hospital, adult, or pediatric subacute, nursing facility, distinct-part nursing facility (NF) Level of Care with the option of returning to and/or remaining in his/her home or home-like setting in the community in lieu of hospitalization.
  • The goals of the waiver are to: 1) facilitate a safe and timely transition of Medi-Cal eligible beneficiaries from a medical facility to his/her home and community utilizing Nursing Facility/Acute HospitalWaiver services; and 2) offer eligible Medi-Cal recipients, who reside in the community, but are at risk of being institutionalized within the next 30 days, the option of utilizing the Nursing Facility/Acute Hospital Waiver services to develop a home program that will safely meet his/her medical care needs.
  • Eligibility Requirements:  (1) Must have full scope Medi-Cal Eligibility  (2) Physically Disabled (no age limit)  (3) Must meet the acute hospital, adult or pediatric subacute, nursing facility, distinct-part nursing facility, adult, or pediatrict Level B (skilled) nursing facility, or Level A (intermediate) nursing facility (NF) Level of Care with the option of returning to and/or remaining in his/her home or home-like setting in the community in lieu of  institutionalization.  (4) Must meet other criteria and requirements listed in the waiver
  • Waiver Services Provided: Private Duty Nursing, including Shared Nursing; Home Health Aide Services; Case Management; Transitional Case Management; Environmental Accessibility Adaptations; Personal Emergency Response Systems (PERS); PERS Installation and Training; Medical Equipment Operating Expenses; Waiver Personal Care Services; Community Transition; Habilitation Services; Respite Care (home and facility)
  • Enrollment – Persons per Waiver Year (January 1 – December 31): there is a cap on the number of persons that the waiver can serve in a calendar year.  In 2007 that cap was 2,392 persons.  In 2011 it was 3,032.   

 

STATEMENT BY PABLO CARRANZA

The following was the prepared statement issued by Pablo Carranza on the filing of his lawsuit against the Brown Administration:

“I have muscular dystrophy. I can only move my eyeballs, tongue and left thumb. Despite this, I graduated from high school and went to community college. I was even involved with an internet group that wrote a blog about the Denver Broncos, my favorite football team.

 

“I understand that my disability is progressive and will eventually prove fatal and that is why the time I spend with my family is so precious to me. I do not want to spend the remainder of my life in an institution away from my family or suddenly die because my nurse was not there to help me. These are the things I fear will happen if I lose my nursing hours.

 

“When I turned 21 years old this year, the Department of Health Care Services told me that I no longer needed the nursing hours I had been receiving. This made me so afraid and depressed. I no longer wanted to turn 21, but I couldn’t stop it.

 

“I am afraid that I will die if I stop receiving the nursing care that I need because I need a nurse with me at all times.  I have a tracheotomy and use a ventilator. I am tube fed and need constant suctioning.  I live with my mother and brother Raul, who has the same disability and nursing needs. When my brother turned 21 two years ago, his nursing hours were also reduced.  My mom is not a nurse and cannot provide the nursing care that I or my brother need.  For the Department of Health Care Services to say that my mom can be my nurse is dangerous and wrong.

 

“If I am left alone without a nurse and my mom is trying to help my brother, and something goes wrong with me, it will not take long for my life to be in danger. For example, due to my secretions, I must be orally suctioned approximately every 10-15 minutes when saliva builds up in my mouth, nose and throat. If I am not suctioned at the right time, I will choke on my saliva because I can’t swallow. This will prevent me from getting enough oxygen and I will die.

 

“I want to live with my family because they help me pursue my goal to become a productive person. They always help me with every task that I need to do. I also need the emotional and physical support they always provide me. My family always treats me very good and they provide me with everything that I need because of my condition. They make me feel like a normal person.

 

“Like most people my age, I want to explore the world around me by going out, meeting new people, going to college, having a career, and I really just want to have a chance to have a normal life.

 

“I used to attend college at a local campus. I want to return to college but a cut to my nursing hours will mean that I cannot return. I miss attending college because I miss meeting people, I can’t make new friends, and it’s harder for me to take online classes because there is no teacher. I have to write more, and because I write only with my thumb, it takes me a lot of time to finish my lectures and I get more tired.

 

“Because of my condition, it is vital that a trained nurse is with me at all times whether I’m at home or on a trip. Going to school is no exception. I am no longer able to drive my wheelchair myself because of my condition. I need to rely on a nurse to do this for me. These issues make it impossible for me to not just go to school but to go out anywhere without a nurse. I feel frustrated because I can’t have a life without a nurse’s care.

 

“What the Department of Health Care Services has done is leave me with few choices for the remainder of my life. I either try to stay at home for as long as I can and risk getting very sick or even dying, or be forced to go to an institution to live the remainder of my days away from my family. This to me would be no different than spending the rest of my life in prison.”

# # # 3

Advocacy Without Borders: One Community – Accountability With Action

CDCAN Reports go out to over 65,000 people with disabilities, mental health needs, seniors, people with traumatic brain and other injuries, people with MS, Alzheimer’s and other disorders, veterans with disabilities and mental health needs, families, workers, community organizations, facilities and advocacy groups including those in the Asian/Pacific Islander, Latino, American Indian, Indian, African-American communities; policymakers, and others across the State. 

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To reply to THIS Report write:  Marty Omoto at martyomoto@rcip.com   Twitter: martyomoto  New Phone:  916-757-9549

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