From the Adult System to Long-Term Care

A Comparative Approach to Planning for Aging Adults With Intellectual and Developmental Disabilities

By Crystal West Edwards and Ryann M. Siclari

As published in the December 2022 Elder Law edition of New Jersey Lawyer, available at njsba.com.

New Jersey provides numerous services to support individuals who are financially needy, medically needy, aging, blind or disabled. Both the New Jersey Division of Medical Assistance and Health Services ("Medicaid") and the New Jersey Division of Developmental Disabilities (DDD) provide a suite of services, each having separate and distinct eligibility criteria. Individuals with Intellectual and Developmental Disabilities (I/DD) must coordinate services to assist with major activities of daily living. This is compounded by the typical aging processes including physical and/or cognitive decline. This article will discuss Medicaid and DDD services available to aging adults with I/DD and the unique challenges faced when selecting services.

Adults With I/DD

DDD provides services to I/DD adults beginning at age 21. There are several requirements an individual must meet to qualify for services through the DDD. First, they must have a developmental disability as defined in N.J.A.C. 10:46-1.3. Second, the person must be eligible for Medicaid under one of numerous paths to eligibility. Third, they must enroll in one of the two Medicaid waiver programs administered by the DDD: the Supports Program or the Community Care Program (CCP). Typically, an individual will be enrolled in the Supports Program once the other eligibility criteria are met.[i]

Developmental Disability

I/DD is more than "(i) an education classification of neurological impairment, (ii) attention deficit hyperactivity disorder, (iii) learning disorder, (iv) oppositional defiant disorder, [or] (v) conduct disorder.[ii] Instead, I/DD is "a severe, chronic disability" ... "which (i) is attributable to a mental [and/or] physical impairment ..., (ii) manifest[s] before age 22, (iii) is likely to continue indefinitely, (iv) results in substantial functional limitations in three or more ... areas of major activities of daily living, and (v) reflects the need for a combination and sequence of special interdisciplinary or generic care, treatment, or other services, which are of lifelong or extended duration and are individually planned and coordinated."[iii] Such areas of major activities of daily living include self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency.[iv]

Medicaid Eligibility

By way of background, each state that participates in Medicaid is required to have a state plan which complies with the Medicaid Act.[v] The states are permitted to amend their state plan, with approval by the Centers for Medicare and Medicaid Services (CMS). One comprehensive amendment to the state plan is known as a Section 1115 Demonstration Waiver.[vi] New Jersey elected to amend its state plan accordingly, which outlines numerous paths to Medicaid eligibility ("1115 Waiver").[vii] These paths include, but are not limited to, New Jersey Care, Workability, Supports Program, CCP, and Managed Long Term Services and Supports (MLTSS). Each of these programs provides a baseline of services, known as a Plan A package of services.[viii] Additionally, certain waiver programs (i) provide additional services to the Plan A service package[ix] and/or (ii) have eligibility criteria less restrictive than federal law.[x] However, federal law prohibits an individual from enrolling in two waiver programs simultaneously.[xi]

The Plan A service package includes, but is not limited to, physician and advanced practice nurse services, including primary and specialty care, preventive health care, optometrist, optical appliances, emergency care, audiology and hearing aid services, inpatient hospital care, home health agency services, outpatient hospital care, hospice agency services, lab services, durable medical equipment, prescription drugs, organ transplants, rehabilitative care, dental services, prosthetics and orthotics, inpatient rehabilitation services, mental health/substance abuse services for clients of the DDD, medical day care, Personal Care Assistance (PCA) including the Personal Preference Program (PPP), and ambulance for medical emergency.[xii]

Supports Program

The Supports Program provides employment support, day services and individual/family support services and is typically the first level of services offered to DDD recipients. Commonly, individuals live with family members or independently in unlicensed settings.

For individuals who require a nursing facility level of care but wish to remain in a community setting, there is an additional program called Supports Program + PDN. PDN stands for private duty nursing and is available to those who require skilled nursing facility level of care.[xiii] Supports Program + PDN includes assistive technology, behavioral supports, cognitive rehabilitation, community inclusion services, day habilitation, occupational therapy, prevocational training, support coordination, supported employment, and private duty nursing. Essentially, this program allows a DDD recipient to use their DDD Supports Program services (and underlying service delivery budget) while at the same time use a Medicaid service otherwise available under the MLTSS waiver program. Since federal law prohibits enrollment in two waiver programs (i.e., the Supports Program and MLTSS), the Supports Program + PDN is ideal for many medically needy adults with I/DD who reside in the community.

Community Care Program

The CCP provides residential placement (i.e. group home placement, supportive apartments, etc.) or in-home support services for DDD recipients who have greater support needs. There is a significant wait list for services under this program unless an emergency exists such that the recipient is at risk of imminent peril or homelessness.[xiv]

For an individual to receive services under the CCP, they must (i) meet all of the general eligibility criteria as the Supports Program, (ii) demonstrate the need for an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/ID) clinical level of care, and (iii) reach the top of the waiting list.[xv] The ICF/ID level of care requires an individual to have "substantial functional limitations which require care and/or treatment in an ICF/ID" or alternatively, in a community program under the DDD Community Care Program.[xvi]

An individual who qualifies for the CCP can choose to receive services in a residential setting or remain at home with their family. Depending on the individual's tier classification, 24/7 coverage may be provided in the home setting; however, this does not apply if PDN is needed. In other words, if someone requires private duty nursing, their service options are limited to Supports Program + PDN or an institutional setting. The CCP does not cover private duty nursing.[xvii]

Aging Adults

The Social Security Act, the Medicare and Medicaid Act, and the State of New Jersey all define aged as 65 years or older.[xviii] In fact, there is a 70% chance that an individual turning 65 will need some form of long-term care during their life.[xix] Long-term care may be in the form of home and community based services, such as home health aide assistance or an assisted living facility, or it may be in a skilled nursing facility. Regardless of the care setting, the only government benefits program available when an aged person needs long-term care is MLTSS.

MLTSS covers long-term custodial care in a skilled nursing facility or a home and community based setting such as an assisted living facility or at home. Individuals who are enrolled in MLTSS at home receive the Plan A package of benefits (i.e. the benefits available under all Medicaid programs) and an additional package of benefits which includes home-delivered meals, medication dispensing devices, personal emergency response system, and private duty nursing, among others.[xx]

One of the most common services needed by an aged person living at home is home health aide assistance, which is referred to as Personal Care Assistance (PCA).[xxi] PCA includes assistance with activities of daily living such as bathing, dressing, and ambulating, but it also includes instrumental activities of daily living such as house cleaning, grocery shopping, and medication monitoring. [xxii] Interestingly, PCA is a Plan A service which means it is available under MLTSS or any other Medicaid program.[xxiii] PCA can be serviced in one of two forms: (1) through an agency that contracts with the Managed Care Organization or (2) through the Personal Preference Program which allows the Medicaid recipient to hire an employee who is paid by Medicaid.[xxiv]

Applicants for the MLTSS program must be found eligible clinically and financially.[xxv] Clinical eligibility is defined as needing Nursing Facility Level of Care which is established if the individual "(i) requires limited assistance or greater with three or more activities of daily living; and/or (ii) exhibits problems with short-term memory and is minimally impaired or greater with decision making ability and requires supervision or greater with three or more activities of daily living; or (iii) is minimally impaired or greater with decision making and, in making himself or herself understood, is often understood or greater and requires supervision or greater with three or more activities of daily living.”[xxvi] In order to be financially eligible, income and assets must be below the respective caps. Once an individual meets both the clinical and financial test, they will be deemed eligible for the MLTSS program.

Aging Adults With I/DD

What happens when someone is both aged and has a developmental disability? The intuitive answer would be to apply for benefits under both programs; however, that is not the case. An individual cannot be eligible for both MLTSS and the Supports Program or CPP.[xxvii] Accordingly, they must pick the program based on level of care and the types of services needed.

The program an individual selects depends initially on level of care. As discussed above, both MLTSS and Supports Program + PDN require a nursing facility level of care. If an aged person with a developmental disability does not meet nursing facility level of care, the decision as to which program to be on is quite simple: they must receive services under the Supports Program. Conversely, an individual cannot enroll in the CCP if they require institutional level of care and "cannot be maintained safely in the community."[xxviii] In the situation where someone requires institutional level of care due to a combination of age and disabilities, they should transition to the MLTSS program.

In conclusion, the Supports Program and CCP often provide more robust services in the community to younger individuals with I/DD. On the other hand, the MLTSS program often provides more robust services once someone needs nursing facility level of care in a skilled nursing or assisted living facility. Essentially, the physical and cognitive limitations that come with aging compound the pre-existing, lifelong need for support and often dictate when to transition to the MLTSS program.

Crystal West Edwards is a principal with Porzio, Bromberg & Newman in Morristown. She is a former member of the Board of Directors for the National Academy of Elder Law Attorneys (NAELA), a Past President of the New Jersey Chapter of NAELA, a Past President and Life Member of the Garden State Bar Association, and a member of the Elder and Disability Law Section of the New Jersey Bar Association. She is certified as an Elder Law Attorney by the ABA Accredited National Elder Law Foundation.

Ryann M. Siclari is counsel with Porzio, Bromberg & Newman in Morristown. She is the Chair of the Elder and Disability Law Section of the New Jersey Bar Association, a member of the National Academy of Elder Law Attorneys (NAELA) and serves as the Legislative Committee Co-Chair of the New Jersey Chapter of NAELA. She is certified as an Elder Law Attorney by the ABA Accredited National Elder Law Foundation.

[i] See N.J.A.C. 10:46-1.2.

[ii] See N.J.A.C. 10:46-2.1(b)(2).

[iii] See N.J.A.C. 10:46-2.1(b)(1).

[iv] See N.J.A.C. 10:46-1.3.

[v] 42 U.S.C. § 1396a.

[vi] See 42 U.S.C. § 1315.

[vii] See NJ FamilyCare Comprehensive Demonstration, available at medicaid.gov/medicaid/section-1115-demonstrations/downloads/nj-1115-request-ca1.pdf (“Waiver”).

[viii] See 1115 Waiver, Table A at 12.

[ix] See 1115 Waiver, Table A at 12.

[x] See 42 U.S.C. § 1396a(a)(10)(C)(i)(iii).

[xi] See 1115 Waiver, Special Term and Condition 32(C) at 27 and 34(D)(1) at 30.

[xii] See N.J.A.C. 10:49-5.2(a).

[xiii] See 1115 Waiver, Special Term and Condition 32(D)(8) at 28.

[xiv] See NJ Division of Developmental Disabilities Community Care Program Policies & Procedures Manual sec 5.1, page 23.

[xv] See NJ Division of Developmental Disabilities Community Care Program Policies & Procedures Manual sec 5.1, page 23 and see 1115 Waiver, Special Term and Condition 38.

[xvi] See NJ Division of Developmental Disabilities Community Care Program Policies & Procedures Manual sec 5.1, page 23 and See 1115 Waiver, Special Term and Condition 38(F)(1) at 37.

[xvii] See NJ Division of Developmental Disabilities Supports Program Policies & Procedures Manual sec. 4.1, page 23 found at nj.gov/humanservices/ddd/documents/supports-program-policy-manual.pdf

[xviii] See 42 C.F.R. § 416.101, 42 C.F.R. § 435.520, and N.J.A.C. 10:72-3.4(a)(5).

[xix] See HHS Office of the Assistant Secretary for Planning and Evaluation, What is the Lifetime Risk of Needing and Receiving Long-Term Services and Supports?, April 2019 available at aspe.hhs.gov/sites/default/files/migrated_legacy_files//188046/LifetimeRisk.pdf.

[xx] See 1115 Waiver, Special Term and Condition 32(F) at 28 and Attachment D at 137.

[xxi] See N.J.A.C. 10:60-3.3.

[xxii] Id.

[xxiii] See 1115 Waiver, Special Term and Condition 27 at 26.

[xxiv] See generally N.J.A.C. 10:60 and N.J.A.C. 10:142, respectively.

[xxv] See 1115 Waiver under Special Term and Condition 32

[xxvi] Id. at 26. See also N.J.A.C. 8:85-2.1 ("dependent in several activities of daily living (bathing, dressing, toilet use, transfer, locomotion, bed mobility, and eating).")

[xxvii] See 1115 Waiver, Special Term and Condition 32(C) at 27 and 34(D)(1) at 30.

[xxviii] See 1115 Waiver, Special Term and Condition 38(C)(2) at 37.