not for...2. “related condition” is a term from federal law. it includes cerebral palsy,...

Cour t Appo in ted Spec ia l Advoca tesOctober 26 , 2016

1500 Union Avenue, Suite 2000, Baltimore MD 21211 | www.DisabilityRightsMD.org

NOT FOR REPRODUCTION

Ext

How to Identify and Advocate

for Children with

Developmental Disabilities

1500 Union Avenue, Suite 2000, Baltimore MD 21211www.DisabilityRightsMD.org

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Carol

Carol was a healthy baby. When she was two weeks old, she wouldn’t stop crying. Her father became upset and threw her against a wall.

Permanent injuries: traumatic brain injury cerebral palsy intellectual disability.

In Ms. Baker’s therapeutic foster home, Carol received love and care for her complex health care needs.

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Carol’s transition at age 21

Carol had no decision maker other than the state of Maryland. Ms. Baker was not a legal decision maker and Carol did not have a CASA.

Ms. Baker was delighted with DDA residential Provider X but DDA chose Provider Y for Carol. Within two months she had two broken legs and stage 3 pressure sores.

After months in the hospital, Ms. Baker took Carol home and petitioned for guardianship.

DDA finally agreed to pay Ms. Baker to provide services to Carol.

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Carol: How could a CASA make a difference?

1. Carol needed an advocate to ensure she secured the best provider for her needs.

2. Ms. Baker needed to know all the available options including whether Carol could remain with her.

3. One possible outcome: With planning, Carol could have remained with Ms. Baker who would be paid for her support services.

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Lenny

Long series of conflicting mental health diagnoses

By age 21, a psychologist diagnosed Pervasive Developmental Disorder

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Lenny’s Transition

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• No SSI• No Medicaid• No Housing• No Job• His loving foster mom, Ms. Cook, kept him in

her home and called DRM.


Lenny: Does he have a DD?

Clues: Mental health diagnoses kept changing and

treatment was not helpful Lenny received special education services

but was not literate and could not work Lenny stole 11 video games at once and was

caught

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Lenny’s experience with DDA

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DDA denied Lenny’s application. DDA often does not believe late changes in

diagnosis. Lenny received a neuropsychological

evaluation that confirmed he has pervasive developmental disorder.

DDA then agreed to serve Lenny and he remains with Ms. Cook.


Tamara

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Lovely, well-dressed young woman

Long string of mental health diagnoses

IEP says emotional disability, behaviors

Documented low IQ


Tamara at Transition

Has SSI Medicaid Representative

Payee Metro Access

Does not have Job skills A job A home Her child Ability to care for

herself

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Tamara: the conflict

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A neuropsychologist determined that Tamara has an intellectual disability and needs DDA support services.

DDA says that Tamara doesn’t have an intellectual disability.


Changes at DDA

DDA changed eligibility processes Advocacy led to a review of DDA eligibility

tools and criteria DDA has agreed to review eligibility for a

certain class of children Other children (“future need supports only”)

need to be reviewed

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The Tough Cases

Eligibility problems arise with Young children People with only physical disabilities People with mild or moderate intellectual

disability Older adults

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Young Children with Autism

Autism is a DD Children can apply for the Autism Waiver

through MSDE The Autism Waiver has a lengthy waiting list Foster children may not be in care long

enough to receive services

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Why DDA services?

DDA has the most comprehensive service delivery system in the State of Maryland, e.g.

o A wide array of supports to help people get jobs, stay employed, and learn skills

o Staff support to help people live in their own homes

o Residential serviceso Assistive technology, home modifications,

behavior supports, and more

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Other good things about DDA

Coordination of Services Person Centered Planning No limits on most services Medicaid waiver creates entitlements and

rights People can keep services even if earnings

exceed allowable Medicaid income

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DDA Medicaid Waiver rights

Person Centered Planning Integrated settings Choice of provider agency Can receive all services needed Protections against discharges Notice and opportunity for a hearing

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What is a developmental disability?

Md. Code, Health General Art.§7-101

(f)“Developmental disability” means a severe, chronic disability of an individual that:

(1) Is attributable to a physical or mental impairment other than the sole diagnosis of mental illness, or to a combination of mental and physical impairments;

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Md. Code definition of DD, cont.

(2) Is manifested before the individual becomes 22 years old; (3) Is likely to continue indefinitely; (4) Results in an inability to live independently without external support or continuing and regular assistance; and (5) Reflects the need for a combination and sequence of special, interdisciplinary, or generic care, treatment, or other services that are individually planned and coordinated for the individual.

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Maryland Code key definitions

Live independently.- "Live independently" means: (1) For adults:

(i) Managing personal care, such as clothing and medication; (ii) Managing a household, such as menu planning, food

preparation and shopping, essential care of the premises, and budgeting; and

(iii) Using community resources, such as commercial establishments, transportation, and services of public agencies; or

(2) For minors, functioning in normal settings without the need for supervision or assistance other than supervision or assistance that is age appropriate.

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Md. Code key definitions

(g) External support.- "External support" means: (1) Periodic monitoring of the circumstances of an individual with respect to:

(i) Personal management; (ii) Household management; and (iii) The use of community resources; and

(2) Rendering appropriate advice or assistance that may be needed.

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“Live independently” for adults

Md. Code(i) Managing personal

care, such as clothing and medication;

DDA interpretation:“manage their self-care/personal care needs, require on-going physical assistance, intense training and/ or frequent supervision in taking care of personal needs such as eating, personal hygiene, medication, dressing, and personal safety.”

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Md. Code(ii) Managing a household, such as menu planning, food preparation and shopping, essential care of the premises, and budgeting;

DDA interpretation:“manage a household, require on-going physical assistance, extensive training and/ or frequent supervision in performing basic cooking, cleaning, maintenance, laundry, and money management.”

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Md. Code(iii) Using community resources, such as commercial establishments, transportation, and services of public agencies

DDA Interpretation“use community resources, require on-going physical assistance, extensive training and/ or frequent supervision in using commercial establishments, such as stores, restaurants, transportation, services of public agencies, and recreation.”

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“Live independently” for Children

Md. Code:

For minors, functioning in normal settings without the need for supervision or assistance other than supervision or assistance that is age appropriate.

DDA says:“Eligibility requirements for children are generally the same as those for adults.”

However, DDA recommends additional testing for children including assessments of “functioning before and after age 7 and at least once again before age 17.”

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Intellectual Disability: Problems with DDA interpretation

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DSM-V description of mild intellectual disability – practical domain


Intellectual Disability: Problems with DDA interpretation

DSM-V description of moderate intellectual disability – practical domain

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More problem areas

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1. “attributable to a physical or mental impairment”: DDA says this means “intellectual disability or related condition”

2. “Related condition” is a term from federal law. It includes cerebral palsy, epilepsy and conditions closely related to intellectual disability. “Related condition” probably includes autism, fetal alcohol syndrome, traumatic brain injury, Prader-Willi syndrome.


Transition Planning for Foster Youth with DD

1. School and Transitiono Attend IEP Meetings: Transition planning begins at age 14. A

transition plan must be developed by the age of 16. o The child needs a parent or authorized parent surrogate for

educational decision making. o If the parent is not willing or able to participate, and there isn’t

already a parent surrogate, the CASA should ask the Court to order DSS to have limited guardianship for educational purposes. DSS must then arrange for an educational surrogate decision maker to take the place of the parent in IEP meetings. For best results, consider asking an interested adult or foster parent to apply.

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School and Transition, Continuedo The IEP Disability Code matters! Review a child’s

Individualized Education Plan to see if it has identified an accurate disability code for the child. DDA is less likely to find a child is eligible if the IEP code is emotional disability or learning disability.

o If needed, ask the school to perform a psychological assessment.

o The Court can order a private psychological or neuropsychological assessment if the school’s is inadequate.

o Ensure the IEP recommends appropriate transition services including DDA for employment and possibly residential supports

o Youth who leave or complete school before age 21.

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2.Apply to DDA as early as possibleo http://dda.dhmh.maryland.gov/Pages/Developme

nts/2015/dda_ea_application.pdfo Anyone can apply on behalf of the childo Consult with DRM to submit the best applicationso Include assessments, especially when a child

may encounter problems with eligibility

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http://dda.dhmh.maryland.gov/Pages/Developments/2015/dda_ea_application.pdf


3. Common errors in DDA applications. Note that the DDA application does not guide applicants to disclose all of the relevant information about a person’s disability.o Saying a person is independent in activities of

daily living when in fact they need prompting or assistance

o Submitting documentation that only shows a mental health diagnosis

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4. DDA Eligibility denialso You can always submit additional information to DDA

and ask DDA to reconsider its decision.o CASA should ask the court to order DSS to file an

appeal if DDA denies eligibility.o An attorney is needed in an appeal. DRM,

unfortunately, does not have the resources to handle these cases.

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5. Meet with the youth’s Coordinator of Community Services (CCS).o All youth with developmental disabilities who are on

Maryland Medical Assistance should have a CCS for planning.

o The youth’s CCS should be able to inform you about the steps for transition including informing DDA when the youth will turn 21, planning the necessary supports, and providing information about service models and providers.

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6. Ensure the DSS case worker applies for SSI and Maryland Medical Assistance (Medicaid) by age 18.

Supplement Security Income and Medical Assistance are critical entitlements and are necessary to obtain DDA services.oSlow processingoAppeals can take up to two years

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7. Work with the CCS to obtain a provider and send all service plans to DDA at least six months before the youth’s 21st birthday:o Foster care ends on the youth’s 21st birthday, so supports need to start before other transitioning youth who do not get services until after the school year ends.o DDA needs to be aware of youth who need residential services due to leaving foster care because otherwise, DDA usually will not provide residential services to transitioning youth.

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8. If the youth with DD wants to remain in the foster family home and the foster family agrees, this is possible with some planning. One possibility is that DDA can pay the foster family as service providers.

9. Ask the CCS about Self-Directed Services, Shared Living and other options.

10. DDA supports can be delivered in a person’s own home. Help the youth apply for public housing.

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11.Legal decision making after court jurisdiction ends

o Power of Attorneyo Supported decision makingo Surrogate decision makerso Legal Guardianship

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11.Co-commitmentAll children in foster care are committed to the care and custody of the local DSS. The law permits the Court to co-commit children with disabilities to the Department of Health and Mental Hygiene (which includes DDA) as well as DSS. DRM recommends that all children with significant disabilities are co-committed to both agencies so that the court can require DHMH to appear and resolve problems with transition planning. Since the transition planning should begin at age 14, and because it can take a year or more to secure DDA services, co-commitment to DHMH should be pursued well before the child turns 20 years old.

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Services for People with DD Who Are Ineligible for DDA Services

Maryland’s Community First Choice option provides community services and supports to enable older adults and people with disabilities to live in their own homes. Available to all people on Maryland Medical Assistance who

meet nursing facility level of care https://mmcp.dhmh.maryland.gov/longtermcare/SiteAssets/Site

Pages/Community%20First%20Choice/CFC%20Fact%20Sheet%20-%20July%202015.pdf

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https://mmcp.dhmh.maryland.gov/longtermcare/SiteAssets/SitePages/Community%20First%20Choice/CFC%20Fact%20Sheet%20-%20July%202015.pdf


Community First Choice Services• Personal Assistance Services • Personal Emergency Response Systems • Technology • Environmental Assessments • Accessibility Adaptations • Consumer Training • Supports Planning • Transition Services • Nurse Monitoring • Home Delivered Meals

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Obtaining Community First Choice services can be very slow

People often do not receive enough hours of support and the process for reconsideration is extremely slow

Apply early for foster youth

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Available Resources

http://disabilityrightsmd.org/publications-2/Scroll down to “Developmental Disabilities”

http://dda.dhmh.maryland.gov/SitePages/Home.aspx

http://www.thearcmd.org/resources http://www.md-council.org/resources/

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http://disabilityrightsmd.org/publications-2/

http://www.thearcmd.org/resources

http://www.thearcmd.org/resources

http://www.md-council.org/resources/

Contact DRM for advice.

DRM intake:Phone: 410-727-6352 ext.0 Toll free: 1-800-233-7201TTY: 410-235-5387

Nancy PinelesManaging Attorney1500 Union Ave., Suite 2000Baltimore, MD 21211-1982Direct line: [email protected]

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not for...2. “related condition” is a term from federal law. it includes cerebral palsy,...

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