Federal Settlement Expands Access to Medicaid

Consumer-Directed Personal Assistance and Nursing Services

August 1, 2008

Valerie Bogart, Selfhelp Community Services & Robert Brigillo, Nassau Suffolk Law Services

On June 12, 2008, the Protection and Advocacy for persons with Developmental Disabilities (PADD) program at Nassau/Suffolk Law Services (NSLS) obtained a federal court settlement that will expand access to two Medicaid home care programs in New York State – the Consumer Directed Personal Assistance Program and the Private Duty Nursing program.  The case challenged policies and practices of the New York State Department of Health (DOH) effectively denying home care services to Plaintiff, Jeanette Leon, and threatening her with institutionalization in violation of the Americans with Disabilities Act (ADA) and the Medicaid law.  (Leon v. Danes, et.al., (CV 07-1674 E.D.N.Y.).  The settlement is posted on the Online Resources Center.1

Facts of Named Plaintiff

Jeanette is twenty–two years old and has lived with and been cared for by her mother, Veronica Leon, her whole life.  Jeanette has been disabled since birth and suffers from Cerebral Palsy, severe developmental delays, a seizure disorder, glaucoma, severe allergies, and mental retardation. Jeanette's father abandoned the family long ago leaving Veronica Leon to independently raise Jeanette. 

In order for Jeanette to remain at home, she requires nursing and assistance with eating, dressing, toileting, and all other activities of daily living.  Mrs. Leon has managed this intense level of care for her daughter with help from Medicaid home care programs, such as private duty nursing.2  As a result, Jeanette has enjoyed an active life and completed high school.  She engages in various recreational activities with her mother, such as trips to the park, shopping malls, restaurants, museums, concerts, among other activities.

Receipt of Medicaid nursing services has been problematic over the years, the result of a shortage of nurses willing to take Medicaid cases in Suffolk County because of the low Medicaid payment rate.  A previous lawsuit brought by NSLS resulted in a settlement providing for a higher rate for home nursing services for Jeanette for two years.   However, after the settlement expired, problems finding nurses resurfaced.3

Veronica Leon was advised to apply on Jeannette's behalf for home care through the Consumer Directed Personal Assistance Program (CDPAP).4  CDPAP allows Medicaid home care recipients or a friend or relative  to assume responsibility for directing their home care program.  Either the consumer -- or a "self-directing other" person on her behalf -- hires and trains personal care aides  to perform the necessary skilled tasks, which would otherwise have to be performed by a nurse.  NYS Education Law §6908, subd. 1(a)(iii). For Jeanette to be eligible, her mother, acting as the "self-directing other" would need to direct the program. 

Jeanette was found eligible for CDPAP by the Suffolk County Department of Social Services (SCDSS) in May 2005, and the program was  functioning well.  CDPAP ensured Jeanette regularly received the home care she needed in contrast to the lapses experienced with Medicaid nursing.  In addition, CDPAP was much less costly to the State and County than nursing care.  With home care in place, Veronica Leon was able to work as a part-time teaching assistant to help pay the household's expenses.

In March, 2006 SCDSS terminated Jeanette from CDPAP because Veronica Leon was occasionally leaving the house to work and was not present at all times to "supervise" the provision of CDPAP to Jeanette.  The termination was made despite a back-up plan created by Mrs. Leon to ensure her daughter was never without someone to assist with her needs.  In December, 2006, the State DOH affirmed SCDSS's termination of CDPAP pursuant to a recent DOH policy that prohibits CDPAP assistance for non-self-directing patients like Jeanette who require nursing assistance, unless a self-directing other is home at all times to supervise the CDPAP personal assistant.5  Additionally, DOH failed to provide any alternative Medicaid home care for Jeanette, such as  private duty nursing services, to prevent Jeanette's institutionalization.  Veronica's only options were to care for Jeanette 24 hours a day or place her in a nursing home. 

The Settlement

The Settlement of this case provides for new policies and procedures to be implemented by the State DOH and local districts  in both the Medicaid CDPAP and Private Duty Nursing programs.

The revised CDPAP policies amend and clarify a 2006 directive on CDPAP, called DOH 06 OMM/LCM-1.  Question 8 in this directive required that the CDPAP aide be "supervised and directed while performing" a skilled task, by the friend or family member who directs care for a CDPAP recipient ("a self-directing other").  The settlement clarifies that a self-directing other does not have to be present at all times in which skilled nursing tasks are administered by a CDPAP aide to a non-self-directing recipient of CDPAP.  The settlement specifically amends Question 8 of the LCM.

The revised policy also provides guidance to local Department of Social Services (DSS) districts State-wide regarding the assessment process for the receipt of CDPAP by non-self-directing recipients.  The guidance clarifies how a district determines which consumers are "self-directing," and for those who are not, the level of involvement required of the "self-directing other."

The Settlement also establishes procedures for the receipt of Medicaid private duty nursing services where previously there had been a vacuum, except in the few local DSS districts that still process these applications.6  The new DOH policies and procedures describe private duty nursing services, inform applicants (and their representatives) as to who can provide the services, describe how to apply for services, and require decisions to be made within 21 days of a fully documented application.  The guidelines require that  applicants be informed of how to obtain a list of Medicaid private duty nurses in their area by calling the Medicaid helpline at 1-800-541-2831 and online at www.homecare.nyhealth.gov. 

Significantly, the settlement establishes statewide procedures for obtaining Medicaid private duty nursing services if there is difficulty finding a provider.  One of the options established is the right of clients or their representatives to apply at the local DSS for a DOH case-specific enhanced payment rate.  The enhanced rate is applicable in all DSS districts in the State pursuant to the Settlement.7

The Settlement provides that the Private Duty Nursing procedures will be issued and available at all local DSS districts and will be posted on the State's web-site.

Finally, the Settlement provides compensation to Jeanette for services paid out of her trust while left without any home care services from DOH, and attorneys fees for plaintiffs counsel.

For information regarding settlement, see the documents posted on the Online Resource Center, or contact Robert Briglio at the NSLS PADD program, (631) 232-2400.

Footnotes

1. Registration is required, which is free.

2. Soc. Serv. L. 365-a(2)(l), 18 N.Y.C.R.R. 505.8.  Services are authorized using prior approval procedures under 18 NYCRR 513.

3. Subsequent litigation establishing an enhanced rate for PDN in Nassau and Suffolk Counties, Scholtz v. Novello et al., CV-02-4245 (E.D.N.Y.) and Bacon v. Novello et al., CV-02-4244 (E.D.N.Y. 2004), was of no benefit to Ms. Leon because the counties no longer processed applications for PDN by 2006.  (Settlements posted in the Online Resource Center)

4. Soc. Serv. L. 365-f,  DOH  06 OMM/LCM-1

5. DOH  06 OMM/LCM-1.

6. The settlement recites that the following seven districts process applications for private duty nursing:  Broome, Chemung, Erie, Oneida, Schenectady, Tompkins and Westchester (Settlement, Exh. B).  For all other districts, applications are processed directly by the State Department of Health in Albany.

7. The Coalition for Medically Fragile Children developed legislation, that was effective January 1, 2007, that creates an enhanced private duty home nursing rate for medically fragile children under age 21.  Medically fragile children are defined as those needing continuous home nursing services.  That law will sunset in 2011.  The Leon settlement establishes a case-by-case procedure for adults and children who are not "medically fragile" to obtain a case-specific enhanced rate, subject to the approval of the Division of the Budget.