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In re Adoption/Guardianship of Dustin R.

Court of Appeals of Maryland

December 21, 2015


Argued November 9, 2015.

As Corrected January 5, 2016.

Circuit Court for Anne Arundel County. Case No. 02-Z-08-000054. Certiorari to the Court of Special Appeals (Circuit Court for Anne Arundel County). Paul F. Harris, Jr. JUDGE.

ARGUED BY Mitchell Y. Mirviss (Venable, LLP of Rockville, MD; Margaret F. Holmes Legal Aid Bureau, Inc., Annapolis, MD) on brief.

Brief of Maryland Disability Law Center, Inc., the ARC Maryland, Inc., the Maryland Coalition of Families for Children's Mental Health, the Maryland Association of Community Services, Accessible Resources for Independence, Inc., the League for People with Disabilities, the Freedom Center, Inc., and the Community Behavioral Health Association of Maryland, Inc. as Amici Curiae in support of Petitioner. Raymond L. Marshall, Esquire Chason, Rosner, Leary.

Brief of Amid Curiae First Star, Inc., et al., in support of Petitioner Dustin R. Jonathan G. Cedarbaum, Esquire Paul R.Q. Wolfson, Esquire Shirley C. Woodward, Esquire Lauren N. Moore, Esquire Wilmer, Cutler, Pickering Hale and Doff, LLP FOR PETITIONER

ARGUED BY Kathleen A. Ellis, Assistant Attorney General (Julia Doyle Bernhardt, Assistant Attorney General, Brian E. Frosh, Attorney General of Maryland of Baltimore, MD) on brief FOR RESPONDENT

ARGUED BEFORE Barbera, C.J., Battaglia, Greene, Adkins, McDonald, Watts, Harrell, Jr., Glenn T. (Retired, Specially Assigned), JJ.


Watts, J.

This case concerns whether the Court of Special Appeals erred in dismissing on its own initiative an appeal by the Department of Health and Mental Hygiene (" DHMH" ), Respondent, and whether the Circuit Court for Anne Arundel County, sitting as a juvenile court (" the juvenile court" ), had the authority to order DHMH to continue to provide services after age twenty-one to Dustin R. (" Dustin" ), Petitioner, a medically fragile child who needed life-sustaining care.

We hold that: (I) the Court of Special Appeals erred in dismissing DHMH's appeal because the juvenile court's order was immediately appealable at a minimum as an interlocutory order granting injunctive relief; (II) the juvenile court had jurisdiction and the statutory authority to order DHMH to develop and approve a written plan of clinically appropriate services in the least restrictive setting that ensured that Dustin would continue to receive services, where Dustin was not yet twenty-one years old when the juvenile court issued its order and where such services were required to protect Dustin's health and welfare, and where the juvenile court's order served to bridge the gap in services as Dustin transitioned from his juvenile guardianship case to adult guardianship care and whatever the final outcome (meaning judicial review, including the appellate process) of any Medicaid fair hearing proceedings; and (III) the juvenile court did not violate the separation of powers.


On December 16, 1992, Dustin was born. In February 1995, when he was two years old, Dustin entered foster care. In that year, the juvenile court terminated Dustin's biological parents' parental rights and granted guardianship to the Anne Arundel County Department of Social Services (" DSS" ) with the right to consent to adoption or long-term care short of adoption. On March 28, 1995, DSS placed Dustin in a treatment foster care home with Jacqueline and Darrell P. (" Mrs. P." and " Mr. P.," respectively).[1] Dustin's placement with Mr. and Mrs. P. was successful; Mr. and Mrs. P.'s home was designated by court order as Dustin's permanent placement; and the juvenile court gave Mr. and Mrs. P. limited guardianship authority to make medical (including mental and dental health), educational, and out-of-State travel decisions on Dustin's behalf. Dustin has lived with Mr. and Mrs. P. since March 28, 1995.

There is no dispute that Dustin is medically fragile and has special needs. Dustin has, among other conditions, an intellectual disability, severe seizure disorder, cortical visual impairment, gastro-esophageal reflux, scoliosis, osteoporosis, ischemic encephalopathy, global orthopedic impairments, cerebral palsy, and an Unidentified Long Chain Fatty Acid Syndrome with a Mitochondrial Disease (a metabolic disorder).[2] Dustin has a tracheostomy, full glottal closure,[3] a colostomy, and a gastrostomy tube for feeding. DHMH administers the Maryland Medical Assistance Program (" Medicaid" ), which has paid Dustin's medical expenses in foster care.

As Dustin grew older, his condition worsened. On February 18, 2005, when Dustin was twelve years old, after an emergency hearing, the juvenile court ordered DSS to secure round-the-clock (twenty-four hours per day, seven days per week) nursing services for Dustin.[4] In response, DSS filed an emergency motion requesting to remove Dustin from the home of Mr. and Mrs. P. and to move him to another placement that would cost " substantially less[,]" as the cost of round-the-clock nursing services exceeded the Medicaid rates. Ultimately, DSS reached an agreement to provide the additional private nursing care to Dustin by supplementing the Medicaid rates through splitting the cost of the supplemental payments between the Developmental Disabilities Administration (" DDA" ) (which DHMH administers) and the Department of Human Resources. In 2006, DSS contracted with MedSource Community Services, Inc. (" MedSource" ) to provide round-the-clock nursing services at an hourly rate that exceeded the Medicaid reimbursement rate. Since that time, Dustin has had a rotating team of eight registered nurses providing round-the-clock services.

As early as 2010, Dustin began to seek the provision of services for himself after age twenty-one. In March 2010, at age seventeen, Dustin filed a petition for co-commitment to DHMH and DSS. The juvenile court denied the petition without prejudice. In June 2011, Dustin filed an amended petition for co-commitment to DHMH and DSS, requesting that the juvenile court require DHMH and DSS to " present a written plan to provide for the care of Dustin [] in the [] home [of Mr. and Mrs. P.], including 24 hour skilled nursing care, upon turning" twenty-one years old. Dustin described his medical condition at that time in the amended petition as follows:

[] Dustin, now 18 1/2 years old, is a severely medically fragile child with special needs. He is diagnosed with Unidentified Long Chain Fatty Acid Syndrome with a Mitochondrial Disease (metabolic disorder), Mental Retardation, Severe Seizure Disorder, Gastro-Esophageal Reflux, Cortical Visual Impairment, Scoliosis, Osteoporosis, Global Orthopedic Impairments, and Cerebral Palsy. Because Dustin has limited ability to metabolize long chain fatty acids, has severe protein allergies, and frequent dramatic fluctuations in his blood sugar levels, he is fed a reduced protein formula and must be assessed a minimum of every 4 hours to prevent a metabolic crisis which may impact multiple body systems. He has a gastrostomy tube[,] as well as an intravenous port for antibiotic administration and blood sample draws. [On] March 8, 2011[,] his rectum was permanently[,] surgically closed[,] and the surgeons created a permanent colostomy. He has fragile skin with a history of pressure ulcers, a history of gastrointestinal bleeding, and urinary retention with a history of bladder infections. At the time of this [amended] petition, he has been diagnosed with Neutropenia, a condition that compromises the body's ability to heal or fight infection due to an extremely low white blood cell count. This condition further complicates the metabolic disorder.
[] He functions at the cognitive level of about a [six-]month[-]old. He does not have the ability to control his movement[,] and is transferred throughout the day from bed to wheelchair to standing frame frequently. In each piece of equipment, he is repositioned frequently[,] with multiple soft pads to prevent pressure sores and to stimulate long bone growth. He can[]not make sound[,] so he must be within sight of the nurse at all times. He receives all nutrition and most of his medication through a gastrostomy tube into his stomach and receives all intravenous medications and nutrition through the surgically implanted BardPort that provides direct access to the heart through the Vena Cava. He has doctor's orders to receive 16 medications at specified times every day[,] and receives 5 additional medications on a " prn[,]" or as needed[,] basis. He receives oxygen through [a] tube in his trachea when his blood oxygen saturation is low. Because he can[]not swallow or clear his airway, he is suctioned through the trachea tube when necessary, as determined by the nurse, to prevent aspiration of fluid into his lungs. He is also catheterized for urine every four hours and more frequently if he has an infection.

(Record references omitted). Eventually, in April 2013, DHMH consented to co-commitment, and the juvenile court ordered DHMH to " continue the planning process for the transition of [Dustin] from foster care under the guardianship of [DSS] to the guardianship of his current foster parents or other appropriate persons[.]" Significantly, between March 2010--when Dustin first filed a petition for co-commitment to DHMH and DSS--and August 2013, on multiple occasions, Dustin requested that the juvenile court order DHMH to fund and provide to him after his twenty-first birthday the same services that he was then receiving. DHMH consistently opposed those requests on the grounds that such requests exceeded the juvenile court's authority.

In Fall 2012, DHMH and DSS began planning for Dustin's transition out of his juvenile guardianship and foster care. On December 6, 2012, representatives of DHMH participated in a quarterly Treatment Team Meeting that DSS organized. A DDA representative, who was at the meeting to help plan for Dustin's transition from foster care, stated that DDA was committed to working with Medicaid's Rare and Expensive Case Management Program (" REM" ) " to determine the recommended level of services." The DDA representative agreed to follow up with a DDA nurse to complete an assessment of Dustin in coordination with REM before the next scheduled Treatment Team Meeting. On February 7, 2013, a DDA nurse assessed Dustin and observed that Dustin " has an extensive medical history with treatment needs that are not deleg[]able to unlicensed staff[,]" but the DDA nurse opined that " the licensed nursing service is able to be shared" because Dustin was " not receiving treatments at intervals that would disallow for shared service with another person of equal or lesser licensed nursing need." On March 4, 2013, Dustin's resource coordinator recommended a service change, in which she noted that the outcome desired was as follows: " Dustin will be provided his current supports in order to continue living in his current residence when he turns 21." The resource coordinator stated that, " for Dustin to continue living in his current residence, all funding [that] he is currently receiving needs to continue, with the budget being through [DDA] at the time that he turns [twenty-one] years old."

On March 7, 2013, DSS conducted a Treatment Team Meeting, which representatives of DHMH, Dustin's resource coordinator, Mrs. P, and Dustin's counsel attended. The notes from the meeting state that the group was " in the process of planning for Dustin's transition to DDA when he turns [twenty-one years old] in December." The notes from the meeting state that a request for service change had already been submitted to DDA, and that DDA was to respond by March 29, 2013. During the meeting, Mrs. P. expressed her concern " for Dustin to continue with the current quality of nursing services[,]" which she believed to be " essential . . . for Dustin to remain in the [P. family] home after he turns" twenty-one years old. The notes from the meeting indicate that " [t]here continue[d] to be disagreement about the rate of nursing care[,]" and reported DDA's intent to distribute a plan for Dustin for care in the P. family home " [i]n the next 3 to 4 months," and the need for an " alternative plan" if Mrs. P. was not comfortable with the plan for nursing care in the P. family home.

In a letter dated June 5, 2013--after DHMH consented to co-commitment--DDA proposed a transition plan for Dustin. DDA stated that Dustin would remain eligible to participate in REM; that Medicaid would pay for Dustin's medical care; and that Dustin would be eligible for a DDA waiver,[5] whether or not he remained in the home of Mr. and Mrs. P. DDA stated that it would seek to move Dustin to a residential program if Mr. and Mrs. P. decided not to seek guardianship.

Mr. and Mrs. P. decided to seek guardianship of Dustin so that he could remain in their home; on July 26, 2013, Mr. and Mrs. P. submitted through Dustin's resource coordinator a proposed service funding plan, in which they, in coordination with MedSource, proposed to " [c]ontinu[e] Dustin's budget 'as is[.]'" The budget for Dustin's care would continue to cover items such as training and orientation for Dustin's nursing team, case management, payment of non-covered medical supplies and prescriptions, partial payment of utilities within the home of Mr. and Mrs. P., and equipment maintenance. In a letter dated August 14, 2013, DHMH responded to the proposed service funding plan, stating that certain services provided to Dustin were " covered waiver services[,]" including Dustin's nursing, medical equipment and supplies, medications, and other medical care, but that other services requested in the proposed service funding plan were not covered, and thus were denied.[6]

On August 26 and 27, 2013, and September 27, 2013, the juvenile court conducted an annual guardianship review hearing. At the hearing, counsel for DHMH and DSS readily acknowledged that the dispute was over funding for Dustin's services, which Mr. P. and Mrs. P. wanted to continue after Dustin's twenty-first birthday. The juvenile court heard testimony from witnesses on Dustin's behalf, including: Dr. Richard Kelley, a pediatrician specializing in metabolic diseases, accepted as an expert in biochemical genetics and the complex nature of metabolic disease and its impact on bodily systems of children and adults, who had been caring for Dustin for approximately fifteen years; Stefania Bockmiller, a registered nurse, who had been caring for Dustin for nearly ten years, accepted as an expert in registered nursing care of medically complex and fragile patients in hospital and community settings; Mona Yudkoff, a registered nurse, accepted as an expert in registered nursing with a focus on rehabilitation and life care planning; Jay Balint, the executive director, president, and chief executive officer of MedSource; Sherry Davis, Dustin's resource coordinator; Mrs. P.; Laura Kress, the assistant director of nursing for nursing practice at Johns Hopkins Hospital; and A'lise Williams, director of DHMH's Board of Nursing, whose deposition testimony was admitted into evidence.

The juvenile court also heard testimony from witnesses on DHMH's behalf and DSS's behalf, including: Rosslyn Hill, Dustin's DSS social worker; Vanessa Bullock, the deputy director of the central Maryland regional office of DDA; and Marie Adams, a DDA registered nurse.

At the hearing, counsel for DHMH argued that the juvenile court lacked the statutory authority to order the relief that Dustin requested--namely, that services continue after his twenty-first birthday. Counsel for DSS argued that ordering the relief would violate the separation of powers. By contrast, Dustin's counsel contended that the juvenile court had the statutory authority to order a plan of clinically appropriate services in the least restrictive setting.

At the conclusion of the hearing, the juvenile court orally ruled that DHMH's plan was clinically inadequate, stating:

I expressed my concern over the position of [DSS]. They are his current guardian, [] yet they stand next to [DHMH] in . . . trying to convince [me] to cut benefits for Dustin.
. . . It's a cutback of services and that's what they're proposing. And I'm not sure that's consistent with their obligations as guardian of his person.
* * *
This is a life and death issue for me. And I'm afraid th[at] DHMH and DSS really [are] not looking out through the eyes of it being a life and death issue.

The juvenile court identified two issues, namely, " what services are necessary[] to obtain the ongoing care needed after the guardianship terminates . . . at age" twenty-one, and whether DHMH's plan offered " clinically appropriate services in the least restrictive setting." The juvenile court stated that the following factual findings had been found to be proven " no matter what standard of proof" applied:

1. Dustin has a disability and is a medically fragile child per the [Code of Maryland Regulations] definition[.]
2. He needs ongoing care[.]
3. He needs clinically appropriate services, which is[,] ultimately, what I have to decide[.]
4. And that is keeping what he already has; it cannot be decreased, it's life-threatening if it's decreased, and his needs were the same and probably will get more complicated as he gets older[.]
5. I believe that the P. residence is the least restrictive setting; I'm not sure anybody's going to dispute that he's been there since age two --
6. There are emotional ties[.]
7. We know a description of all the improvements done to that house[.]
8. Everyone that currently cares for him at the P. house knows what he needs[.]
[9]. I find clearly that 24/7 [registered nurse] care, which he's already getting[.]
And I'm not sure how anybody can dispute that finding because it's already been agreed to. It's already been acknowledged that's what works and that's what keeps him out of the hospital. Anybody [who] suggests that it should be decreased, whether it's motivated by money, just is not looking at this case objectively --
[10]. His needs will increase[.]
[11]. As I stated, maintaining the status quo, in my view, is a matter of life or death[.]
And you know the governmental agencies involved here, I guess I can say I'm a little annoyed, because to me, a deal is a deal. They made a deal with Dustin, they made a deal with the P.'s, and now they want to renege on that deal, and I just have a problem with that. . . . They just out-of-hand rejected the plan submitted, even though they knew it worked, and even though they knew it had been approved for the last six or seven years. . . .
[12]. The current arrangement works and should not be changed[.]
[13]. This case is a level-of-care issue[.]
I find that it's not only in the best interest of Dustin -- and if we value life at all this is a life-and-death matter, in the view of this particular member of the bench. . . .
[14]. A group home is clearly not appropriate[.]
[15]. And all of the services that he's currently getting, just so I'm clear[,] as defined by the statute[,] are " clinically appropriate services."

After making the factual findings above, the juvenile court addressed a two-page document that Dustin submitted entitled " Proposed Findings and Order," and the following exchange occurred:

[THE COURT:] So that's my decision. I've looked at the order, Proposed Findings of Fact and Order, and before I place my signature on it, are there any other comments regarding the order?
[COUNSEL FOR DHMH]: I would ask that the order list the specific services that the Court is ordering that [DHMH] fund.
THE COURT: Counsel, I don't need to do that. If you've been paying attention at this trial, you know what those services are. They're everything he's getting now. . . . [I]n my view[, they] are ...

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