Living Arrangements for Our Adult Children

Who Will Care for Our Child?

Anne and Bill have an adult child who lives with them. Their forty-five-year-old Charles has significant intellectual and developmental disabilities (“IDD”). Charles does not mix well with others. He has lived in the family residence all forty-five years. Anne and Bill will leave a lot of money in the trust created for Charles upon their deaths. But a financial analysis shows that the $3 million will not sustain the house in the trust and Charles’ needs over his lifetime.

Being thinking people, the parents’ concept is to have the residence left in trust and be leased to the State for a group home so Charles can continue to live in the only home he has known. They are willing to make whatever modifications to the home may be required for State approval. Assets of the parents will be in trust for Charles. Charles will be eligible for public benefits, including Medicaid. There are some public benefits that pay for group homes.

Pretty Good Plan. Yes?

Issue: If a resident of a group home is disruptive or is not suited for the other residents, it is the disruptive resident that moves into another home. Anne and Bill do not want Charles to ever have to leave the family home. How do they cut a deal with the State that if Charles is disruptive, the other resident(s) have to move to another home? Will the State move three instead of one? What if Charles never adjusts to other residents?

Again, being thinking people, Anne and Bill consider that perhaps a private non-profit that provided housing for those with IDD may be willing to lease the home, but agree to keep Charles in the home no matter what.

But it is the same issue. Many non-profits receive significant funding from Medicaid and other governmental programs. The regulations are strict. And, even without rules, it could be tough to find a non-profit that will move one resident let alone multiple because Charles may be difficult.

Solution?

Really there is not a good one in this circumstance where the parents want to preserve the continuity of keeping a child in one place. If for no other reason that, even with compatible residents, there may be lots of reasons Charles may have to move. From the trauma of a fire to maintenance of the home that is not cost efficient, there are many reasons why Charles may no longer be able to live in the home because of his IDD.

One has to plan that Charles may have to move.

But parents always want control. And they always want a home where their kid will not get kicked out.

But where? Sometimes parents build an option.

Intentional Communities

Intentional Communities are planned communities where residents have commonality. They tend to be private pay. There is government support for some.

How Are They Formed?

Families with children with disabilities see one another. Their kids go to school together, summer camp, and play together. They talk about doctors, social workers, support for their children, themselves, and programs for the kids. And what to do for their children when they cannot assist them. Where will my child live? Who will care for them? Will they be alright? And they discuss where and how will they live.

Parents get together, learn, and plan. One plan is the intentional community.

How are they formed? In the past, a group of families get together. They decide to build something. They can be in rural settings, suburbs, apartment, and condominium settings.

Financing is only one of the obstacles.

The process can be overwhelming. The licensing, zoning, and regulatory process is enormous.

Prior to 2014, building an intentional community was difficult. Until 2019, any public funding for these communities was sparse.

In support of treating disabled citizens like all citizens, in 2014 the Center for Medicare and Medicaid Services (“CMS”) issued Medicaid regulations for the Home and Community-Based Services (“HCBS”) waiver which pays for support services for long-term care recipients who are not in institutions.

The principle is that Medicaid dollars should be spent in a person-centered manner, not a setting which is institutional or isolating.

According to CMS, there should be no Medicaid benefits to support farmsteads, gated or secured communities, residential schools, or co-located and operationally related settings.

The fear is that these were covers or will lead to institutions.

In March 2019, the list of presumptively isolating factors was eliminated. Communities for residents with similar concerns and interests became eligible for federal assistance. What is known as the HCBS Setting Rule is to ensure that people who receive services and support through Medicaid HCBS programs have full access to community living and are able to receive services in the most integrated setting.

The principle that those with disabilities is to be treated like everyone else is not discarded with intentional communities for those with disabilities. We have over 55 communities specifically for people who choose to age among a population with similar needs and concerns. Freedom to choose is an important right for the disabled.

How Popular Are Intentional Communities?

These places are full. They keep building.

Final Thought

Like all opportunities, there are professionals who plan and build intentional communities. It is a multi-million-dollar business. If someone is interested in learning about intentional communities and building one with others, there are resources we can share with you.