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Lewis Golinker, Esq
Director

Statement of Lewis Golinker, Esq., Director,
Assistive Technology Law Center

June 17, 2002

The Medicaid program is the nation's largest source of health care reimbursement for Americans who are poor and who are disabled; in particular, for poor and disabled children. In 1998, Medicaid was the source of health care coverage for almost 60 percent of all children who are younger than 18 and whose family incomes are below the poverty line. ¹

For coding decision makers, Medicaid has numerous special circumstances, different and distinct from Medicare. Medicaid has an unique statutory purpose and, unique features among its services (benefits categories). Of equal significance, Medicaid's role as the major reimbursement source for children's health care requires special consideration of the unique issues related to children's physical and psycho-social development; and, of children's unique societal roles and responsibilities, such as mandatory school attendance and status as dependent members of families.

Congress stated a clear and well-known purpose for the Medicaid program as a whole: "to furnish medical assistance . . . and rehabilitation and other services to help [recipients] attain or retain capability for independence or self-care."² The Courts have stated this statutory purpose: "recipient independence and self-care," is the "primary goal" of the Medicaid program.³

This statutory purpose is unique to Medicaid. It is not found in and it does not apply to the Medicare Act.⁴ Most significantly, decisions regarding coding and correspondingly, the scope of treatments, rehabilitative equipment and assistive devices that are covered by Medicaid, must be consistent with and give effect to this Congressional policy.

The Medicaid Act incorporates unique services (benefits categories), consistent with its statutory purpose of recipient "independence and self-care" and its special role in relation to children's health. Most significant is the Medicaid service: Early and Periodic Screening, Diagnostic and Treatment Services, more commonly known as EPSDT.

EPSDT is available only to children, i.e. Medicaid recipients between birth and age 21.⁵ EPSDT. is a required or mandatory Medicaid benefit,⁶ and as such, it must be provided by all states.

The EPSDT benefit mandates that all children receive, on a periodic basis or more frequently if necessary, a comprehensive health screening to "determine whether an individual's developmental processes fall within a normal range of achievement according to age group and cultural background."⁷ The screening must address the full range of functioning, including inter alia: "gross motor development, focusing on strength, balance [and] locomotion." ⁸

EPSDT also mandates that for any developmental delays, health conditions or disabilities identified in children, that the Medicaid program "arrang[e] for (directly or through referral to appropriate agencies, organizations or individuals) corrective treatment... ." ⁹ Of greatest importance, the scope of treatment that is available to address - to correct or ameliorate - these conditions includes any service listed in the Medicaid Act, including those services the state may have otherwise elected not to include in its state Medicaid plan.¹⁰

Congress stated that the purpose of including the EPSDT benefit in the Medicaid program is to make it the "nation's largest preventive health program for children."¹¹ Congress mandated that ongoing, affirmative efforts be taken to identify, as early as possible, potential adverse health conditions or their pre-cursors. Then, by directing that every potentially coverable Medicaid service be available to address those health conditions, Congress created a system intended to prevent or cure the conditions, or minimize their adverse health effects.

The Medicaid EPSDT benefit is sui generis -- one of a kind. It has no parallel in Medicare or any other public or private health benefits program.

For children who require rehabilitation equipment and assistive devices¹² to treat their disabilities, prevent their progression, or lessen their effects, at least eight Medicaid services - all of which are available to children through the EPSDT benefit - can serve as a basis for coverage and access. The eight services, or benefits categories, are:

• home health care services;¹³
• prosthetic devices; ¹⁴
• rehabilitative services;¹⁵
• preventive services; ¹⁶
• occupational therapy services; physical therapy services; and speech-language pathology services; ¹⁷ and
• eyeglasses. ¹⁸

These services are listed because they expressly include equipment in their definitions, or their intent and purpose is sufficiently broad to include coverage of equipment.¹⁹

Like EPSDT, these services all require special consideration by coding decision makers. For one, the list of Medicaid services that will include rehabilitation equipment and assistive devices is much longer than the equipment related benefits categories within Medicare. In Medicaid but not Medicare, for example, rehabilitation therapies: occupational therapy, physical therapy, and speech-language pathology, all provide coverage for "necessary supplies and equipment." In addition, Medicaid but not Medicare has specific "rehabilitative services" and "preventive services" benefits both of which may provide coverage for equipment.

Of equal importance is that Medicaid programs must ensure the scope of covered treatments and equipment is consistent with and gives effect to the purposes underlying each of these services.²⁰ Coding decisions, and corresponding coverage policy must reflect these varied goals, some of which are unique to the Medicaid program.

Medicaid recognizes that children are not just adults in smaller packages. Their medical care needs are different, but also, their lives are different. Children's' lives are different in part because they are mandated, by state laws throughout the country, to attend school. They also are different because they are dependent members of their families whose activities often are dictated not by their own needs or preferences, but by those of those of their parents.

Medicaid's EPSDT benefit clearly recognizes that children's' health needs are unique. Children are in the developmental phase of their lives, and may require a range of interventions for development to proceed normally. EPSDT requires Medicaid programs to consider physical development, and also cognitive and psycho-social development.²¹ Access to and interaction with and control of the child's environment is universally recognized by the medical community as standard practice for normal childhood development in all of these spheres.²² Children also grow physically, and must have access to equipment that incorporates a range of sizes and flexibility to grow as the child grows. Likewise, a long-standing and universally accepted principle related to children with disabilities is that such children should be provided with care that "maximizes the capabilities of the individual and minimizes the effects of the disabilities." ²³ A related principle is that children with disabilities are to be given maximum access to the environments and activities that children without disabilities enjoy.²⁴

Medicaid's recognition that children attend school is found in the Medicaid Act, which expressly authorizes Medicaid to pay for the related services on an eligible child's Individualized Education Plan (IEP).²⁵ A child's rehabilitative equipment and assistive device needs are expressly required to be identified on the IEP as related services. In addition, Medicaid has been barred by the Courts from imposing location restrictions such as "at home only" on some of its services.²⁶ A comparable federal policy decision prohibits Medicaid programs from imposing a "homebound" requirement, in clear contrast to the federal statutory homebound requirement under Medicare.²⁷

Finally, in addition to, not in contradiction to the goal of independence and self-care, Medicaid recognizes that children are not free agents in our society. Instead, they are dependent members of families whose activities must, of necessity, often reflect the needs and preferences of adults. Children must be able to come and go with their parents, using the means of transportation available to the family, to whatever locations and for whatever reason, or duration.

Medicaid's unique statutory purposes, its unique range of services, and its special role in children's health protection and promotion all impose special obligations on decision makers responsible for coding and coverage policy. In particular, the concept of "medical -purposes," commonly applied to "durable medical equipment" determinations, must be viewed in the context of these Medicaid program characteristics.

To date, state Medicaid programs have been responsive to these purposes and roles, covering and providing a wide range of seating, positioning, mobility and communication devices. Medicaid decision makers recognize that children with disabilities have special needs for rehabilitation equipment and assistive devices "to increase [their] independence and functionality, ... and to prevent the development of learned helplessness." ²⁸ Medicaid decision makers give effect to the medical principles that developmentally, children who have maximum independence and control of their environment have higher self-esteem, stronger interpersonal relationships and generally better mental health.²⁹

Medicaid coverage policies and practices also implement the principle that persons with disabilities must be seated and positioned such that functional access to activities and interactions in all environments is maximized, even if accomplishing this goal requires multiple devices.³⁰

They provide devices, including as necessary, multiple devices, and integrated mobility strategies that will assure children meet the mobility needs arising in all their daily activities, including coming and going to school, keeping up with their friends, and going to the homes of friends and family and to locations in the community.³¹ They also ensure that these devices are sufficiently lightweight and flexible to be able to be transported in family vehicles.³²

And, they recognize that as children grow, their rehabilitative equipment and assistive devices must be sufficiently flexible to accommodate their changing needs, or, policies must exist to ensure that outgrown devices are replaced.

For these principles to be honored, it is essential that the current range of Medicaid covered equipment is not narrowed in the course of a ministerial process of merging disparate coding systems. Such an outcome is neither necessary nor appropriate, and will be devastating to the lives and health of children with disabilities. Coding decision makers must take special care to avoid interpretation of the phrase "medical purposes" that is based on the Medicare principles but which have no Medicaid parallel, or that is inappropriately narrow to meet the special circumstances of the Medicaid program.

Thank you.

1. U.S. Bureau of the Census, Statistical Abstract of the United States, Table 137 (2001 Edition).

2. 42 U.S.C. § 1396(2).

3. Meyers v. Reagen, 776 F.2d 241,243 (8th Cir. 19985); see also Skubel v. Sullivan, 925 F.Supp. 930, 941 (D.Conn. 1996)(acknowledging independence and self care as purposes of the Medicaid Act as a whole) affirmed sub nom. Skubel v. Fuoroli, 113 F.3d 330 (2nd Cir. 1997).

4. The Medicaid and Medicare programs are recognized to have some similarities, but they also are distinct in important respects. See e.g., Skubel v. Fuoroli, 113 F.3d 330,336 (2nd Cir. 1997)(noting differences between Medicaid home health services, with no homebound requirement as compared to Medicare). Many of these differences, explained in the text that follows, directly impact the scope of coverage for items of equipment.

5. 42 U.S.C. § 1396d(a)(4)(B). EPSDT is defined by the statute at 42 U.S.C. § 1396a(a)(43) and 1396d(r).

6. 42 U.S.C. § 1396a(a)(10)(A)(stating that the Medicaid services listed in § 1396a(a)(l)-(5), (17), and (21) are mandatory services.

7. 42 U.S.C. § 1396d(r)(l); State Medicaid Manual, § 5123.2.A.1.

8. State Medicaid Manual, § 5123.2.A.l.a.

9. 42 U.S.C. § 1396a(a)(43)(C).

10. The Medicaid statute, 42 U.S.C. § 1396d(r)(5) states that the scope of the EPSDT benefit includes:

such other necessary health care, diagnostic services, treatment and
other measures described in subsection (a) of this section to correct
or ameliorate defects and physical and mental illnesses and
conditions discovered by the screening services, whether or not
such services are covered under the state plan.

The reference to "subsection (a) of this section" refers to 42 U.S.C. § 1396a(a) which lists all the services that comprise the Medicaid program.

11. H.R. Rep. No. 3299 (1989). This purpose also has been recognized by the Courts on numerous occasions. See e.g., Frew v. Ladd, No. 3:93 CV 65, Slip Op. at 8 (E.D.Tex. Aug. 10,1994)("The plain language of the statute demonstrates that Congress was trying to increase preventative health care services for minor Medicaid recipients."); Frew v. Gilbert, 109 F.Supp.2d 579 (E.D.Tex. 2000)("The purpose of the EPSDT program is to ensure that poor children receive comprehensive health care at an early age, so that they will develop fewer health problems as they grow older.... Preventive health care identifies health problems that may respond to early treatment, but if left untreated, may instead lead to serous health conditions.") Accord, Salazar v. District of Columbia, 938 F.Supp.926, 952 (D.D.C. 1996); HCFA Region VI (Dallas) Regional Medical Services Letter, 93-110 (Nov. 22,1993).

12. Repeated reference is made in this presentation to rehabilitative equipment and assistive devices, or equipment, because the Medicaid Act never uses the phrase "durable medical equipment," in contrast to the Medicare Act. 42 U.S.C. § 1395x(n). Likewise, there is no Medicaid definition of the phrase "durable medical equipment," also in contrast to Medicare. 42 C.F.R. § 414.202. For Medicaid, the operative term is "equipment." For example, the Medicaid home health services benefit includes equipment, as a mandatory component of that service. 42 C.F.R. §§ 440.70(a); 440.70(b)(3).

13. 42 U.S.C. § 1396d(a)(7). The purpose of the Medicaid home health services benefit is to maintain independence and self-care, and to prevent institutionalization. Skubel v. Sullivan, No. N-90-279 Ruling on Motion for Preliminary Injunction Slip Op. at 16 (D.Conn. July 6,1990). This purpose is, in turn, influenced by two others: first, that as a public benefits program, Medicaid must consider the least costly way to achieve these purposes, see Detsel v. Sullivan, 895 F.2d 58,65 (2nd Cir. 1990)(Medicaid practices that do not consider or reflect cost efficiency principles are not reasonable and will not be upheld); accord Skubel v. Fuoroli, 113 F.3d 330 (2nd Cir. 1997); and, second, that Medicaid will be responsible for the costs of ongoing institutional care for its recipients, if independence at home in the community cannot be maintained. 42 U.S.C. § 1396d(a)(4). Viewed together, Medicaid programs must consider the comparative costs of these services alternatives when making coverage determinations, i.e., the one-time acquisition costs of equipment that will support independent living will, almost always, be far less expensive than the comparable ongoing expenses of nursing facility or other institutional care.

14. Prosthetic devices are identified as a Medicaid service at 42 U.S.C. § 1396d(a)(12) and are defined in the federal Medicaid regulations as: "replacement, corrective, or supportive devices prescribed by a physician or other licensed practitioner of the healing arts within the scope of his practice as defined by state law, to (1) artificially replace a missing portion of the body; (2) prevent or correct physical deformity or malfunction; or (3) support a weak or deformed portion of the body." 42 C.F.R.§ 440.120(c).

15. Rehabilitative services are identified as a Medicaid service at 42 U.S.C. § 1396d(a)(13) and are defined in the federal Medicaid regulations as: "any medical or remedial services recommended by a physician or other licensed practitioner of the healing arts within the scope of his practice as defined by state law, for maximum reduction of physical or mental disability and restoration of a recipient to his best possible functional level." 42 C.F.R. § 440.130(d).

16. Preventive services are identified as a Medicaid service at 42 U.S.C. § 1396d(a)(13) and are defined in the federal Medicaid regulations as: "services provided by a physician or other licensed practitioner of the healing arts within the scope of his practice as defined by state law, to (1) prevent disease, disability and other health conditions or their progression; (2) prolong life; and (3) promote physical and mental health and efficiency." 42 C.F.R. § 440.130(c).

17. Physical Therapy, Occupational Therapy, and Speech-Language Pathology services, are identified as a Medicaid service at 42 U.S.C. § 1396d(a)(l1). They can be covered by Medicaid programs as independent services, 42 C.F.R.§ 440.110(a)-(c); as part of the home health care services benefit, 42 C.F.R. § 440.70(b)(4); or as part of the rehabilitative -services benefit. The Medicaid definition of these three services makes clear that each is a source of coverage for equipment. The regulatory definitions state that the scope of these therapy services includes: "any necessary supplies and equipment." 42 C.F.R. § 440.110(a)-(c); Meyers v. Reagen, 776 F.2d 241 (8th Cir. 1985); Will T. v. Taylor, 3:95 CV 2901 (JEC) Slip Op. at 37-38 (N.D. GA. Mar. 1,2000).

18. Of particular significance is Medicaid's recognition that necessary equipment is part of the occupational therapy services benefit. Assistive device assessment, provision and training are core functions of occupational therapists. In addition, the principles underlying the practice of occupational therapy are identical to the "independence and self-care purposes of the Medicaid program. Occupational therapy is defined as:

The therapeutic use of purposeful and meaningful occupation (goal directed activities) to evaluate and treat individuals who have a disease or disorder, impairment, activity limitation or participation restriction -which interferes -with their ability to function independently in daily life roles, and to promote health and wellness.

AOTA, Model Practice Act, 1999(emphasis supplied); see also, The American Occupational Therapy Association, Code of Ethics for the profession of Occupational Therapy (1988)("The American Occupational Therapy Association and its component members are committed to furthering people's ability to function fully within their total environment. To this end, the occupational therapist renders services to clients in all stages of health and illness...."); J. Acquaviva, Occupational Therapy Practice Guidelines for Adults with Stroke. (Rockville, MD: American Occupational Therapy Association, Inc. 2001)(the role of the occupational therapy practitioner and the purpose of occupational therapy assessment and treatment services is "to evaluate and treat persons who have a disease or disorder, impairment, activity limitation, or participation restriction that interferes with their ability to function independently in their daily life roles and to promote health and wellness."); C. Colangelo & D. Gorga, Occupational Therapy Practice Guidelines for Cerebral Palsy, (Rockville, MD: American Occupational Therapy Association, Inc. 2001)(same); C. Dolhi, Occupational Therapy Practice Guidelines for Spinal Cord Injury. (Rockville, MD: American Occupational Therapy Association, Inc. 2001)(same); V. Radomski, Occupational Therapy Practice Guidelines for Traumatic Brain Injury. (Rockville, MD: American Occupational Therapy Association, Inc.2001)(same); C. Richer & C. Bhasin, Occupational Therapy Practice Guidelines for Neurodegenerative Diseases. (Rockville, MD: American Occupational Therapy Association, Inc. 2001)(same); P. Moyers, The Guide to Occupational Therapy Practice. (Rockville, MD: American Occupational Therapy Association, Inc. 1999) [reprinted from 53 Am. J. Occupational Therapy Special Issue (1999)] ("Occupational therapy practitioners provide services and create opportunities for persons to achieve independence in their home, community and workplace.").

The state licensing standards of every state that the scope of occupational therapy practice is to conduct assessments and to design and implement treatment programs that "maximize the independence" of individuals with disabilities, and to enable them to obtain. * "optimum functional performance" in daily life tasks and roles.

In addition, extensive occupational therapy professional literature, practice and policy exists regarding individual assessment for and selection of assistive devices, including mobility devices. E.g., B. Bain, "Assistive Technology in Occupational Therapy," in H. Neistadt & E.D. Crepeau, Eds., Willard & Spademan's Occupational Therapy (Philadelphia: Lippincott 1998); J. Angelo, Assistive Technology for Rehabilitation Therapists (Philadelphia: F.A. Davis 1997); E. Trefler & D. Hobson, "Assistive Technology," in C. Christiansen & C. Baum, Occupational Therapy: Enabling Function and Well Being (Thorofare, New Jersey: SLACK 1997); J. Hamel & J. Angelo, 'Technology Competencies for Occupational Therapy Practitioners," 8 Assistive Technology 34 (1996); E. Trefler & S. Taylor, "Prescription and Positioning: Evaluating the Physically Disabled Individual for Wheelchair Seating," 15 Prosthetics & Orthotics International 217 (1991). For mobility devices, environmental accessibility -- consideration of the type of environments in which the client lives and how and -where he or she plans to use the device -- are standard, required elements of a complete assessment. (J. Deitz & B. Dudgeon, "Wheelchair Selection Process," in C. Trombly, Occupational Therapy for Physical Dysfunction (Philadelphia, PA: Lippincott 1997); S. Taylor & D. Kreutz, "Powered and Manual Wheelchair Mobility," in J. Angelo, Ed., Assistive Technology for Rehabilitation Therapists (Philadelphia, PA: F.A. Davis 1997); C. Adler & M. Tipton-Burton, "Wheelchair Assessment & Transfers," in L. Pedretti, Ed., Occupational Therapy: Practical Skills for Physical Dysfunction. 4th Ed. (St. Louis, MO: Mosby 1996).

18. Eyeglasses are identified as a Medicaid service at 42 U.S.C. § 1396d(a)(12), and are defined in the Medicaid regulations as: "lenses, including frames, and other aids to vision.. .." 42 C.F.R. § 440.120(d).

19. The rehabilitative services benefit, for example, does not expressly mention the word "equipment," but has been recognized by HCFA as sufficiently broad to serve as a base for equipment coverage. E.g., HCFA Region III (Philadelphia) Region Office Medicaid Letter, 93-110 (October 26, 1993):

This is to provide policy guidance concerning Medicaid coverage of assistive devices....

* * * *

The rehabilitation benefit option is inclusive of other services covered under Medicaid and can, therefore, be used by States to cover services provided under other Medicaid regulatory authorities as well. There is nothing in the rehabilitation regulation that explicitly provides for Medicaid coverage of supplies or equipment; however, under the rehabilitation option a state can cover necessary supplies or equipment.

Accord, HCFA Region VIII (Denver) Regional Identical Letter, No. 94-074 (March 31, 1004); HCFA Region III (Philadelphia) Regional Office Medicaid Letter, 93-97 (October 26, 1993); HCFA Region VI (Dallas) Medical Services Letter, 93-110 (Nov. 22,1993).

Examples of decisions relying on the rehabilitation services benefit include Decision No. 38514, Minn. Dept. of Human Services, Nov. 9,1994. It directed Minnesota Medicaid to provide an Ortho-Kinetics Travel Chair to a 10 year old Medicaid recipient with spastic quadriplegia cerebral palsy. The device was approved because it was necessary to enable this youth to achieve "the maximum reduction of physical or mental disability and restoration of an individual to his best possible functional level. Conclusion of Law 6, Slip Op. at 6. Accord, Decision No. 52600 Minn. Dept. of Human Services, Aug. 14,1998 (directing Minnesota Medicaid, consistent with the purposes of the rehabilitative services benefit, to provide an adapted carseat to a 5 year old with severe behavioral problems secondary to autism); Decision No. 44641 Minn. Dept. of Human Services, June 21,1996 (directing Minnesota Medicaid, pursuant to the rehabilitative services benefit, to provide a Redman Chief stand-up wheelchair to an 11 year old with spina bifida and other physical disabilities); Decision No. 35817a, Minn. Dept. of Human Services, Aug. 10,1994 (directing Minnesota Medicaid, pursuant to the rehabilitative services benefit, to provide a Sara Lift to an adult with multiple disabilities); Decision No. 33019, Minn. Dept. of Human Services, Mar. 23,1993 (directing Minnesota Medicaid pursuant to the rehabilitative services benefit, to provide an ultra-light wheelchair to a child); Decision No. 32949, Minn. Dept. of Human Services, March 24,1993(same).

Other equipment decisions base their finding on the Medicaid preventive services benefit. E.g. Decision No. 52048 Minn. Dept. of Human Services, Jan. 14,1999 (directing Minnesota Medicaid, pursuant to the preventive services benefit, to provide a Permobile standing wheelchair to a 9 year old with severe cerebral palsy); Johnson .v. Minnesota Dept. of Human Services, No. C6-95-5803 (Wash.Co. D.Ct. Sept. 4,1996)(directing Minnesota Medicaid, pursuant to the preventive services benefit, to provide a HiRider stand-up wheelchair to a 37 year old with multiple sclerosis); Decision No. 44641, Dept. of Human Services (June 21, 1996)(directing Minnesota Medicaid, pursuant to the preventive services benefit, to provide a Redman Chief stand up wheelchair to an 11 year old with spina bifida).

20. The "scope of coverage" for each Medicaid service, i.e., the range of specific treatment, rehabilitation and assistive devices that they cover, must be consistent with and give effect to the purposes of the Medicaid Act as a whole, and the specific purpose stated for each service. Specifically, Medicaid programs must provide each service "in sufficient amount, duration and scope to reasonably achieve its purpose." 42 C.F.R, § 440.230(b).

21. State Medicaid Manual, º 5123.2.A. 1 .a. Developmental Assessment must consider:

• Gross motor development, focusing on strength, balance;
• Fine motor development, focusing on eye-hand coordination;
• Communication skills or language development, focusing on expression, comprehension, and speech articulation;
• Self-hep and self-care skills;
• Social-emotional development, focusing on the ability to engage in social interaction with other children, adolescents, parents and other adults; and
• Cognitive skills, focusing on problem solving or reasoning.

22. It has long been recognized that the normal process of childhood development includes learning, at an early age, of the ability, through behavior, to control one's environment.

Access and interaction with one's environment is a necessary
component for a child's development. The deleterious effects of
severely restricted mobility have been documented even in non-
disabled children whose mobility is restrained for medical or other
reasons and in children with neuromuscular disorders. The most
frequent outcome of limited environmental interaction ha been a
persistent pattern of apathetic behavior, and specifically a lack of
curiosity and initiative. It is also well known that environmental
deprivation may result from limited access, may disrupt the emotional
and psychological development in an involved child. Therefore, access
to one's environment is critical to a child's development.

Statement of Marshall Taniguchi, M.D., Department of Physical Medicine, University of Minnesota, quoted in Decision No. 38514 Minn. Dept. of Human Services (Nov. 4,1994). Dr. Taniguchi's comments are well supported in the professional literature. See e.g., Hildebrand, V. (1988) "Young Children's Self-Care and Independence Tasks: Applying Self-Efficacy Theory," Early Child Development and Care 30,199-204; Brinker P. & Lewis, M.., (1982) "Discovering the Competent Handicapped Infant: A Process Approach to Assessment and Intervention, Topics In Early Childhood Special Education, 2(12), 1-15.

See also, Decision No. 44641, Minn. Dept. of Human Services (June 21, 1996)(awarding Redman Chief stand up wheelchair to 11 year old; psychologist reported: "Developmentally, [ ] is [at] an age where autonomy and independence are essential for his continued psychological development.").

23. These principles date back to the early 1980's. American Academy of Pediatrics, (September 1984) "Guidelines for Home Care of Infants, Children and Adolescents with Chronic Disease," Pediatrics, 74, 434 (The goal of a home care program "is the provision of comprehensive, cost-effective health care within a nurturing home environment that maximizes the capability of the individual and minimizes the effects of the disabilities."); see also U.S.Dept. of Health & Human Services, (1982) Report of the Surgeon General's Workshop. Children with Handicaps and their Families: Case Example -- the Ventilator Dependent Child (children with the most severe disabilities, i.e., those who are "technology dependent," must be given access to their communities.) This report was one of the more than 100 medical literature references that led the Court in Detsel v. Sullivan, 895 F.2d 58 (2nd Cir. 1990) to require Medicaid private duty nurses to serve their patients wherever in their communities their normal life activities take them. In the subsequent settlement of Pullen v. Cuomo, 88 CV 774 (N.D.N.Y. 1991), HCFA adopted the holding of Detsel as national Medicaid policy. The policy is reprinted at 2 Medicare & Medicaid Guide, ¶ 14,571.

24. Statement of Ann H. Schutt, M.D., Department of Physical Medicine and Rehabilitation, Mayo Clinic, Rochester, Minnesota, quoted in Decision No. Decision No. 38514 Minn. Dept. of Human Services (Nov. 4,1994)("[I]t is the prevailing standard that children diagnosed with cerebral palsy, muscular dystrophy and myelodysplasia should have maximum access and mobility to environments and activities that children without disabilities enjoy. Interaction in such activities and environments is often necessary to develop an age appropriate level of physical and mental functioning."); see also Decision No. 52600, Minn. Dept. of Human Services (Aug. 14,1998)(awarding Columbia 2000 adaptive car seat to 5 year old with severe autism)("It is the prevailing community standard to provide children with disabilities with opportunities to travel throughout the community as children without disabilities do.") This decision formed the basis for a Minnesota Medicaid coverage policy related to adaptive carseats for children with disabilities. Letter dated October 9,1998 to Steven Elliot, Esq., from Kathleen Cota, Assistant Director, Minn. Dept. of Human Services. This policy also is supported by numerous HCFA policy letters related to adaptive carseat coverage. HCFA Region II (New York) Medicaid State Operations Letter, 93-42 (July 8, 1993); HCFA Region VI (Dallas) Medical Services Letter, 93-064 (June 25, 1993); HCFA Region V (Chicago) State Letter 33-93 (July 1993).

See also decisions referenced at note 32

Medicaid decisions also clearly distinguish between "supervision" which a child with disabilities may require from a parent or skilled care giver, and "independence" in mobility. Decision No. 1622176N, N.Y. Dept. of Social Services (May 2, 1991)(awarding power wheelchair to 11 year old who also has manual wheelchair and stroller, to enable "spontaneous access to the environment."):

The Agency's contention [that the stroller and manual wheelchair -dependent mobility devices offer sufficient mobility opportunity] is without merit, since it ignores the distinction between the need for supervision, which is common to all children albeit more pronounced in the Appellant's case, and the ability to move when one chooses or needs to do so, which the Appellant lacks.

Accord, Decision No. 1142579Q (May 3,1988)(power wheelchair approved for 8 year old who is ventilator-dependent and who requires 24 hour private duty nursing services; while nurses provide supervision and monitoring, and as necessary appropriate services, they are not required to be constantly in attendance to either move or reposition the child, for which the child can achieve independently with requested power wheelchair.)

25. 42 U.S.C. § 1396b(c).

26. Detsel v. Sullivan, 895 F.2d 58 (2nd Cir. 1990)(Medicaid is prohibited from restricting private duty nursing services to a recipient's home; instead, nurses must be free to come and go with patients wherever their normal life activities take them); Pullen v. Cuomo, 88 CV 774 (N.D.N.Y. 1991)(settlement adopts Detsel olding nationwide); Detsel guidelines adopted in State Medicaid Manual § 4310; ccord Skubel v. Fuoroli, 113 F.3d 330 (2nd Cir. 1997)(Court applies Detsel olding to Medicaid home health nursing services).

27. HCFA State Medicaid Director Letter, Olmstead Update No. 3, attachment 3-g July 25, 2000) prohibits Medicaid programs from applying "homebound equirement:"

The homebound requirement is a Medicare requirement that does not apply to the Medicaid program. Imposing a homebound requirement on receipt of Medicaid home health benefits... violates regulations related to "amount, duration and scope of services".... and "comparability of services" ....

28. In Starkweather v. Wing, the Court directed Medicaid funding for a specially adapted wheelchair for a 14 year old with cerebral palsy because it was needed to:

increase the independence and functionality of the petitioner's infant, especially in emergency situations an to prevent the development of "learned helplessness."

242 A.D.2d 961, 962,662 N.Y.S.2d 658,659 (4th Dept. 1997).

Learned helplessness is generally viewed as the perception that one cannot control the outcomes that one experiences. Abramson, L., Seligman, M & Teasdale, J., (1978) "Learned Helplessness in Humans: Critique and Reformation," Journal of Abnormal Psychology, 87(1), 49-74; Weisz, J., (1979) "Perceived Control and Learned Helplessness Among Mental Retarded and Nonretarded Children: A Developmental Analysis," Developmental Psychology, 75,311-319.

Learned helplessness is of particular concern to children with severe physical disabilities. Children with disabilities frequently experience more inability to control their environment early in their lives and have a harder time recovering from such failure. Dean, S. and Rattan, A. (1987) "Measuring the Effects of Failure with Learning Disabled Children," International Journal of Neuroscience, 37, 27-30; Weisz, J., (1981) "Learned Helplessness in Black and White Children Identified by their Schools as Retarded and Nonretarded: Performance Deterioration in Response to Failure," Developmental Psychology, 17(4), 499-508. As a result, children with disabilities experience more "learned helplessness" than do their peers without disabilities. The long-term effect of these experiences is that some children with disabilities do not learn cause-and-effect, . choice making skills, ways to exert control over their environment, or other perceptual- -cognitive skills that are important in the normal process of development. Lahm, E. (Ed.)(1989) Technology with Low Incidence Populations: Promoting Access to Education and Learning (Reston: Council for Exceptional Children). Children who miss the experience of control may become passive and unmotivated school-aged children who give up trying to interact or communicate effectively with their environment. Douglas, J., Reeson, B., & Ryan, M. (1988) "Computer Microtechnology for a Severely Disabled Pre-School Child," Child Care, Health and Development, 14, 93-104. By providing a means for children with disabilities to exert control over their environment, such as by providing independent mobility, learned helplessness can be prevented or overcome. Abramson, L., Seligman, M & Teasdale, J., (1978) "Learned Helplessness in Humans: Critique and Reformation," Journal of Abnormal Psychology, 57(1), 49-74.

29. See e.g., Decision No. 38514, Minn. Dept. of Human Services (Nov. 9, 1994)(directing Medicaid to provide an Ortho-Kinetics travel chair to a 10 year old with spastic quadriplegia due to cerebral palsy). The decision quotes Marshall Taniguchi, M.D., Department of Physical Medicine and Rehabilitation, University of Minnesota Medical School, who stated:

Access and interaction with one's environment is a necessary component for a child's development.... The most frequent outcome of limited environmental interaction has been a persistent pattern of apathetic behavior, and specifically a lack of curiosity and initiative. It is also well known that environmental deprivation, that may result from limited access, may disrupt the emotional and psychological development in an involved child. Therefore, access to one's environment is critical to a child's development.

Ann H. Schutt, M.D., Department of Physical Medicine and Rehabilitation, Mayo Clinic, Rochester, Minnesota, added:

Interaction in such activities [that children without disabilities enjoy] is often necessary to develop an age-appropriate level of physical and mental functioning.

Patricia Montgomery, an experienced pediatric physical therapist, stated:

It is my experience the children who have maximum independence and control of their environment have higher self-esteem, stronger interpersonal relationships and generally better mental health.

Accord, Decision No. 31464, Minn. Dept. of Human Services (Feb. 4,1993)(directing Medicaid funding for power wheelchair for adult with quadriplegia who is resident of nursing facility to address both mobility and mental health needs. Client was described as forced to "lie helpless in his room" without a means of independent mobility; to have "depressed mood as associated with his total paralysis and placement in the skilled nursing facility;" "to have periods of sadness which relate to his inability to actively manipulate his surroundings.")

30. Appropriate seating and positioning in all environments in which the child is present is the universally accepted standard of practice in occupational and physical therapy. This principle underlies the Medicaid policy that a recipient may need both a power chair for mobility independence, as well as one or more dependent mobility devices, such as manual wheelchair and/or adapted stroller. See Decision No. 38514, Minn. Dept. of Human Services (Nov. 9,1994):

It is the prevailing community standard to expect that a child with cerebral palsy be positioned properly in a manner that would maximize their functioning abilities and access to activities.

Statement of Ann Schutt, M.D., Department of Physical Medicine and Rehabilitation, Mayo Clinic, Rochester, Minnesota.

It is the community standard that persons with cerebral palsy be positioned and supported in a manner that prevents negative impact on all body systems. It is [the] community standard that persons be seated and positioned in a manner that maximizes functional access to all activities and interactions in all environments.

Statement of Patricia Montgomery, P.T.

See also, Sophie S. v. Steffen, C9-92-877 (Itasca Co. (Minn.) District Ct. (Sept. 23, 1992)(settlement providing manual wheelchair to child who also has a power chair; child spent significant amounts of time out of chair due to non-accessibility of settings, during which she was not seated or positioned appropriately, and was often unable to participate or benefit); Letter dated January 5,1995 to Luther Granquist, Esq., from Maria Gomez, Commissioner, Minnesota Department of Human Services, adopting as state policy, that children can have multiple wheelchairs in order to assure access to, and appropriate seating and positioning in all settings.

Appropriate seating and positioning also is the foundation for the HCFA policy letters supporting adapted carseat funding, which have been reflected state decisions related to adapted carseats. See note 25.

31. Mobility strategies, including ambulation and multiple mobility aids and devices, which may include crutches, walkers, strollers, manual wheelchairs, power wheelchairs, and scooters, are recognized as the standard of practice for individuals with mobility disabilities. See e.g., Decision No. 38514, Minn. Dept. of Human Services (Nov. 9, 1994):

I do not find justification for a nonambulatory child being denied a manual wheelchair that has been prescribed by a physician and physical therapist to meet the child's requirements for independent ambulation, regardless if a power wheelchair has been obtained.

* * * *

It is the customary practice for a handicapped patient using a power wheelchair to also have a manual wheelchair that is correctly fit to use in places and situations when the power wheelchair is not appropriate.

* * * *

I prescribe appropriate seating and mobility equipment based upon a patient's individual needs.... My colleagues and I in the Department of Physical Medicine and Rehabilitation often prescribe both an electric and a manual wheelchair [for patients] with cerebral palsy and other physical disabilities, determined on an individual need basis. My colleagues and I have had patients with both cerebral palsy and other physical disabilities successfully obtain both a power and a manual chair from private insurance and Medical Assistance ...

Statement of Ann Schutt, M.D., Department of Physical Medicine and Rehabilitation, Mayo Clinic, Rochester, Minnesota.

Although not all of our clients who use wheelchairs have both a power and a manual wheelchair, it is not the community standard that persons must choose between a power wheelchair or a manual wheelchair if both are needed.

To the contrary, it is the standard among my professional peers that persons with mobility needs should have the supports necessary that will allow them maximum access, mobility and independence. Frequently, persons will use more than one mobility device to accomplish these goals.

Statement of Patricia Montgomery, P.T.

Maximum access, mobility and independence is necessary because Medicaid decisions consistently recognize that children's lives reach an extraordinary range of locations in their communities, including school and school outings, the homes of family and friends, shops, malls, restaurants, libraries, movie theaters, day programs, and for older youth, places of employment. Mobility devices are provided to allow access to and participation in all of these activities. See e.g., Decision No. 44003, Minn. Dept. of Human Services, April 2,1996(directing Medicaid funding for Quickie P200 dual-function wheelchair; to enable youth to go to school; to required settings that are inaccessible, e.g., homes of Mends and family, sporting events; to keep up with friends; and maintain independence); Decision No. 38514, Minn. Dept. of Human Services, Nov. 9,1994(directing Medicaid funding for Ortho-Kinetics travel chair for 10 year old; supplements power wheelchair used for school and other accessible locations; travel chair to provide appropriate seating and positioning for access to homes of relatives, stores, restaurants and recreation sites -and activities, including bowling and fishing); Decision No. 33019 Minn. Dept. of Human Services, March 23,1993(directing Medicaid funding for Quickie II wheelchair for 6 year old to allow increased mobility to "participate maximally at home, school, and in the community" and "to allow[] him the most independence to maximize his capabilities."); Sophie S. v. Steffen, C9-92-877 (Itaska Co. (Minn.) District Ct. (Sept. 23, 1992)(settlement directing Medicaid funding for manual wheelchair for child who has power wheelchair but which cannot be used at Post Office, Dairy Queen, library, Sunday school, and community based businesses and restaurants); Decision No. 1350430L, N.Y. Dept. of Social Services, July 13,1990(awarding scooter to 17 year old with spina bifida who was unable to maintain a normal pace of movement with "Canadian crutches" and a pass-through gate; evidence established youth was not able to keep up with her friends, reach classrooms within her school setting or community settings).

See also Lauderbaugh v. Commissioner, Minnesota .Dept. of Human Services, C2-94-147 (Hubbard Co. Dist. Ct. Sept. 15, 1994)(directing Medicaid to provide manual wheelchair to adult with power wheelchair to enable recipient to travel on the second floor of his home, in the family van, to homes and businesses in the community that are not accessible). This decision and two others became the basis for a general Medicaid policy:

I believe that there are situations in which a second wheelchair is medically necessary, and serves a different purpose than the power wheelchair already used by the recipient.

Letter dated January 5,1995 to Luther Granquist, Esq., from Maria Gomez, Commissioner, Minnesota Department of Human Services.

32. See e.g., Decision No. 44003, Minnesota Dept. of Human Services (April 2, 1996)(awarding Quickie P200 power wheelchair with manual conversion unit, to enable transport in family car; decision recognizes family cannot afford van with lift and wheelchair must be able to be transported in family vehicle); Decision No. 38514, Minnesota Dept. of Human Services (Nov. 9,1994)(awarding Ortho-Kinetics travel chair to 10 year old in part because existing power wheelchair cannot be transported, and thereby limits child's access to community); Lauderbaugh v. Commissioner, Minnesota Dept. of Human Services, C2-C2-94-147 (Hubbard Co. Dist. Ct. Sept. 15, 1994)(directing Medicaid funding for manual wheelchair in addition to power chair because power chair cannot be transported); see generally, Medicaid decisions and policy statements regarding adaptive carseats, note 24.

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