Many of us belong to a group that has come to be known as the sandwich generation. The image is apt. On the one hand, we must care for our children, and on the other, we must care for elderly parents and in-laws. For many, these dual pressures are daunting. But it’s fascinating to observe that in many respects, these tasks are mirror images of each other.

Raising children requires that parents step back, little by little, allowing a wholly dependent newborn gradually to discover her abilities and talents and become fully independent. With parents, it is the reverse. People to whom we looked for guidance and support yield their independence, little by little, and often with resistance and resentment. The trick in successful parenting, as well as the successful shepherding of our elders, is to know what balance to strike between dependence and independence at various stages in their lives.

Anyone who has these responsibilities can tell you that there are no prescribed steps that must be taken at particular points. The process, like so much else in life, is a dance of accommodation and restraint, with everyone making up the steps as they go along.

What can we learn from these twin processes as we try to raise to adulthood our children with disabilities? These very special children of ours, whom we have raised to become as independent as possible; whom we have infused with love and support; and whose self-esteem and self-confidence we have bolstered; these children — despite our valiant efforts — often are unable to go off to college, explore the wider world, and live independently.

A recent Wall Street Journal (D1, 30 June 2005) story entitled "Aging Out": When Disabled Children Get Too Old for Public Education, described the dilemmas that parents face, when, at age 21 (26, in Michigan), their children are no longer entitled to a free and appropriate public education. The era of Individualized Education Plans (IEPs) and dedicated teams of teachers devoting their energies to helping children achieve annual goals comes to an end, and there is no comparable group designed to pick up the baton and move these children along. Now, it is primarily up to parents to put in place the necessary supports for their future.

That’s not to say that parents are entirely on their own. The Developmental Disabilities Administration (DDA), under the umbrella of the Maryland Department of Heath and Mental Hygiene (DHMH), will have been informed several years prior to a child’s leaving school that she may, for instance, require residential services because it’s thought she’ll be unable to live independently. Or she may require daytime services, if it’s thought that she’ll be unable to work and support herself. The Division of Rehabilitation Services (DORS), a division of the Department of Education, picks up where the school transitioning team leaves off, and assists individuals with disabilities in a variety of ways: further training, guidance and supported employment. So, young adults who were accustomed to having IEPs, may - under the auspices of DORS - develop an Individualized Plan for Employment (IPE) (sometimes known as an IP). The IPE, like the IEP, sets goals and suggests ways in which they might be achieved, as well as identifies the services needed and who can provide and pay for them. Finally, a young adult who is unable to support herself may qualify for Medical Assistance (MA) or Medicaid, a form of health insurance. (cf. www.ddamaryland.org; www.dors.state.md.us). [This discussion focuses on Maryland, but there are comparable programs in other states.]

Regrettably, establishing the likelihood of these future needs — shelter, employment and medical services — does not automatically translate into the provision of those services. From age 21 on, these young adults are no longer entitled to services — as they were once entitled to a free and appropriate education - but are eligible for them, if openings and funding exist. The distinction is crucial. We’ll come back to that later.

Here’s the way it works. The DDA administers the funds for community services for people with developmental disabilities. The Federal government matches those funds for those individuals who are eligible for Medicaid. In the past, Medicaid recipients had to be housed in institutions, nursing facilities or hospitals, but the Social Security Act gave states the option to disregard — or waive - those requirements so that states could offer alternative living arrangements in support of their disabled citizens and still receive Medicaid support. In other words, Maryland’s Medicaid Home and Community-Based Service (HCBS) Waiver, operating continuously since 1984, has made it possible for people to receive Medicaid support whether they are institutionalized or not. As states enroll more individuals under the HCBS waiver, their pool of resources is doubled, and more people can be served.

Now a young adult’s eligibility for Medicaid assistance depends on his income. The income and assets of his family or any other individuals who may live with him have no bearing on that eligibility at all. An individual qualifies for Medical Assistance if he earns no more than $1,656 per month under the waiver, but no more than $350 under the original rules (the Social Security Administration adjusts these amounts annually). Also, the Medicaid applicant may not have assets above $2500 under the waiver. Families with assets above that level often use a certain kind of trust fund to shelter them.

What are the advantages to a family in applying for the HCBS Waiver? The waiver program guarantees the family and individual a resource coordinator, access to additional Medicaid services (that include prescription medications and some therapies), and the right to request a hearing within 90 days of the date of being notified of any change in services. These benefits target some of the perceived trade-offs in giving up an institutional arrangement — the security that comes with centralized care and medical services, and a ready-made community.

However, the HCBS Waiver has another virtue that has led it to be embraced by state legislatures all over the country. It provides people with disabilities with greater opportunities to live more independently, to live in neighborhoods and to participate in the civic life of their communities. Like the civil rights and equal rights movements before it, the disability rights movement upholds the view that our communities are enriched by diversity, and that individuals, disabled or not, are entitled to equal rights and opportunities.

So what kinds of housing options are available for a young adult who cannot live on his own without supports and services? The good news is that there are many. In Maryland, the DDA offers three distinctive kinds of services for disabled adults. People can be placed in an institutional setting (known as an Intermediate Care Facility for the Mentally Retarded (ICF/MR). Maryland has four such residential centers. People can also be placed in a community-based program, the Home and Community-Based Service (HCBS), administered by non-profit providers contracted by the State who serve residents without regard to race, religion or national origin. Finally, a new waiver program called "New Directions", recently approved by Maryland’s Center for Medicare and Medicaid Services (CMS), empowers individuals and families to design their own individualized programs (cf. www.aspe.hhs.gov/daltcp/reports/01cfpack.htm).

HCBS options vary among the non-profit agencies. For instance, the Jewish Foundation for Group Homes (JFGH), a non-profit agency founded in 1982 and operating in Montgomery and Fairfax counties, provides four different kinds of homes for the disabled. They include group homes, where 6 people or fewer live together as house-mates; alternative living units (ALU), where 3 or fewer people share a living space; community-supported living arrangements (CSLA), where individuals who live independently in their own dwellings or apartments, or at home with their families, may receive support services; and individual support services (ISS) for those receiving 10 hours of support or less per week. (cf. www.jfgh.org)

Bello Machre (BM), a non-profit agency founded in 1972 and operating primarily in Anne Arundel County, offers a different mix of options. There is campus living — where 5 group homes, housing 5-6 individuals each — open onto a common courtyard; community living — where 3 or fewer individuals share a home; family living — where an individual may have a room with a family, or have an apartment, but live fairly independently; and family and individual support services for people who live at home. BM also provides respite care services, 24 hours a day, 7 days a week, during family hospitalizations, emergencies and vacations (cf. www.bellomachre.org).

For both the JFGH and BM, and many other non-profit agencies like them throughout the state, the mission is to place individuals with disabilities in settings that typical adults might choose — neighborhoods — to enhance the opportunities for inclusion and participation in the community. Moreover the homes they administer are scattered widely in their respective areas (JFGH currently serves about 150 people in 20 homes, 2 ALU and 44 apartments in the metro DC area. BM manages 54 homes and serves about 150 people in Anne Arundel County). For both JFGH and BM, residents work during the workweek — supported or otherwise — or are placed in day programs, so that they can continue to develop their abilities and talents as individuals and as productive members of society. When they are not working, residents enjoy their leisure time — like their typical neighbors — with the assistance of agency-provided vans that take residents on outings and even on vacations.

The "New Directions," or self-determination, initiative takes the spirit of the HCBS model one step further. Here individuals and families have greater control and choice over the community supports they receive and work with service coordinators to create living arrangements tailored to that individual. These include identifying whom the person would like to live with, where and in what type of home; hiring the most compatible staff; and organizing work and activities. For example, the Jubilee Association of Maryland (cf. www.jubileemd.org) and the Arc of Anne Arundel County (cf. www.arcofannearundel.org) are two agencies that work closely with individuals and families to design these personalized programs. The Maryland Developmental Disabilities Council has awarded TASH a grant to assist families interested in learning about this option (cf. www.tash.org and www.family-networks.org.

The movement away from institutional to home-based care has evolved over time, partly in response to claims that institutions housing the disabled were far more costly to run than individual homes in the community, a crucial variable for states grappling with the financial responsibilities of serving their citizens in need. The evidence for that claim is disputed (cf. www.vor.net; "Cost Comparisons of Community and Institutional Residential Settings: Historical Review of Selected Research", by Kevin W. Walsh, Theodore A. Kastner, and Regina Gentlesk Green, in Mental Retardation, volume 41, number 2: 103-122, April 2003). Even so, let’s consider some of the logistical factors that contribute to the costs of providing quality care in different settings. As to which settings provide a better quality of life, we’ll come to that later.

Institutional costs have been high because the populations they serve tend to have greater needs; these are residents with severe and profound disabilities, who require often complicated medical care, and for whom supervision is needed around the clock. As these people age, the costs associated with their care rises too, but medical and habilitative supports are available on-site. To compare, people placed in homes have tended initially to have fewer needs because their disabilities are less severe. But even in home settings, problems arise as residents age. For example, people with Down’s syndrome are prone to obesity and the early onset of aging. Until recently, most didn’t live beyond middle age, but many who do develop Alzheimer’s. These individuals, once widely mainstreamed in our communities, will require intensive care and supervision as they age, the kind of care that may no longer be feasible, affordable or safe in a home-based setting.

For individuals who are placed in homes, the support teams are quite different from those in institutions. Decentralized staffs — scattered through many homes — cannot easily be supervised, nor can medical care be rationalized. For those who choose HCBS settings for their loved ones, the responsibility for hiring staff to assist residents in the home falls to the particular non-profit agency that runs it. A JFGH home with 5 residents, for example, will have a full-time residential counselor (one for weekdays, another for weekends), in addition to part-time staffers who come in to assist in the mornings as residents prepare for their workday, or in the evenings as they prepare to wind down for the evening. Meal preparation, job sharing around the house and bedtime routines may all involve the assistance of additional staff as well.

Because there is no central chain of authority to supervise such a disparate staff spread over so many different sites, Maryland established the Office of Health Care Quality (OHCQ), from which inspectors are dispatched — often unannounced - to inspect homes, as well as ICF/MR institutions, and confirm that the services promised are in fact being delivered. Both the JFGH and BM perform their own spot-checks on people they employ to staff their homes to assure quality care. Such monitoring of staff — whatever the setting — must be reinforced by good communication among families, caregivers and service coordinators.

Maryland’s disabled residents and their families are particularly well served by the presence of two advocacy organizations that lobby on their behalf. The JFGH and BM belong to the Maryland Association of Community Services (MACS), a nonprofit organization of more than 100 service providers, that advocates for program excellence, high standards and accountability in the provision of services for the disabled in their communities as well as supporting wage initiatives for those who work with the disabled (cf.www.macsonline.org). Earning a decent wage is a very important issue given the high turnover rate among people working in these positions.

At the other end of the spectrum, The Arc of Maryland works directly with families and individuals with disabilities. What began in 1950 as a small group of concerned parents has grown to become the largest statewide advocacy group with a broad mission that includes sustaining "a person-driven service delivery system that incorporates the preferences, addresses the needs and protects the rights of persons with disabilities" (cf.www.thearcmd.org).

Together, The Arc of Maryland and MACS do invaluable and complementary work on behalf of our fellow citizens with disabilities. And there is no shortage of work to be done. Let’s return now to the issue of eligibility.

While there are a variety of programs and providers in place in Maryland to address the needs of the disabled, as of July 1^st 2005, there were 15,026 children and adults waiting for services from the DDA. The Arc of Maryland campaigned successfully in 1999 for a Waiting List Initiative that resulted in a 5 year, $116 million program that benefited more than 8000 children and their families. But no new funds have been earmarked for the extension of that program. Families still on the waiting list have joined up, through Arc, to reactivate the Waiting List Campaign.

This is the dilemma for many families. Despite the variety of programs to choose from, there may be neither openings nor funding to place individuals in suitable and desirable settings. When openings do arise, those who are placed are those in greatest need: people living in dangerous circumstances, people with medical needs or people whose families are simply unable to care for them any longer. This is as it should be. Even so, as long as demand outstrips the supply of available placements, the process of transitioning young adults so that they can achieve greater degrees of independence may be prolonged and difficult for families that have already struggled with enormous challenges for a very long time.

Still, the good news is that there are so many different service providers - as the list of MACS members attests - with missions to help families in one way or another. Many of these also have discretionary funding programs from which families can draw. For instance, annual grants through Bello Machre ‘s Ray of Hope program help families fund, for example, therapeutic and camping services or needed equipment. There are also community groups that offer all sorts of programs for adults with disabilities. Potomac Community Resources (PCR) (cf.pcrhello@earthlink.net) is just one example of an organization that "encourages and supports the integration of persons with developmental differences into the life of the community," by offering, among other things, sports, music and arts programs. Moreover, PCR has become a vehicle for attracting people in the wider community to volunteer and become involved with our disabled population. Indeed, just about every MACS member agency welcomes and encourages the participation of volunteers in their programs.

Among the publicly funded living arrangements in Maryland, people with disabilities might live in an institution, in some kind of group home or in an apartment. But there are also private alternatives, including those where disabled residents might live among typical families in a communal setting. One example is Camphill, an organization "dedicated to social renewal through community building with children, youth, and adults who have developmental disabilities… in which all participants flourish" (cf.www.camphill.org). Meaningful work is an integral part of communal life, and everyone contributes to the life of the community based on his ability. This is yet another lifestyle option for families to consider, one inspired by Rudolf Steiner and his notion of theosophy.

I balked when I began this project to uncover what kinds of programs exist for young adults when, at age 21, they are no longer entitled to attend school. What has become clear to me is that there are many different and attractive options to consider.

For several years Maryland, has favored the model of the community-based program, in the belief that the quality of people’s lives is greatly enhanced when they are integrated into their communities and can age in place. The evidence for the success of this approach is clear. For the JFGH and BM, the group homes are not simply living quarters, but the locus of family and friendships. Housemates live together, celebrate together and vacation together just as families do. Moreover, both these agencies have succeeded in attracting volunteers to befriend their residents and involve them in their communities.

For the same token, there are individuals who are thriving in larger, communal settings, where the prospect of meeting more people — whether disabled or not — is an asset, and for whom the safety of secure boundaries is an important factor in their well-being.

The bottom line is that we want our family members to be safe, happy, loved and engaged with other people. It’s fitting at this point to reflect back on the situation of our parents and in-laws as they age, and whose circumstances mirror — in reverse - those of our growing children. How do we provide our emerging adults the latitude to discover their own independence, while simultaneously erecting the appropriate supports that they still need? On the one hand, the quality of care must be excellent. On the other hand, so too must the quality of life. How we combine these elements ultimately depends on the individual who needs care and the outcomes one can reasonably expect. It seems to me that families are well served by the spectrum of living options available to young adults beyond school age, just as they were by the range of educational opportunities in school. Indeed, the spectrum of living options available to the aging provides a handy blueprint for parents who are trying to imagine what the future for their children with disabilities.

The importance of maintaining a range of options becomes clearer when you think about the kinds of homes people live in over a lifetime: individuals grow up, leave the family home, live in the communal setting of a college dorm, graduate from there to a group home with other young people, live alone, find spouses, raise families in a single family home and then, as empty-nesters, often choose to move to a retirement community where the residents are roughly all the same age, and where, when necessary, they can shift to assisted living quarters.

This kind of lifetime trajectory may not suit, nor be possible, for all individuals with disabilities. Whereas for some, change is a dreaded condition to be avoided, for others, the prospect of change is a welcome adventure. It all depends on the individual. As we navigate our way to finding good homes, we’ll be best served, I think, by those agencies that have flexible models to accommodate our young adults as their lifestyles, goals and aspirations change.