Future Planning & IDD

Future planning can be an emotional and difficult experience, but it’s important to prepare for life changes and how they’ll be managed. It can give you and your care recipient peace of mind, make transitions smoother, and ensure they live the life they want. Some examples of transitions include:

  • Your care recipient moving into an adult assisted living facility
  • Your aging care recipient requiring a higher level of care and transitioning to a care facility
  • Someone else taking over as primary caregiver
  • A caregiver or parent no longer being able to provide care
Man looking at tablet

Make It Person-Centered!

Involve your care recipient as much as possible. Consider interests, values, and preferences. If needed, use communication aids to ensure they can express themselves.

Who To Involve

While your care recipient’s wishes should be at the center, others likely need to be
involved, like:

  • Parents.
  • Siblings. Consider if one of them would be willing and able to become the primary caregiver if something happened to you.
  • Extended family members, like grandparents, who are involved in your care recipient’s life.
    Significant others & close friends.
  • Legal decision makers, like Power of Attorney (POA) or legal guardians (if these apply to your care recipient). Consider whether you need to create a suitable plan for your care recipient’s preferences.
  • Others, like health care providers, legal and financial professionals, social workers, or therapists. These individuals might be able to provide insight into future care needs or plans that should be made.

Expert Tip

If possible, plan for transitions to happen when caregivers (or others) are available to support during and after the transition. This can help prevent the person with IDD having to navigate a
difficult change without proper emotional support in place.

What To Include

Keep this plan in a safe, easily-accessed place. You can use a binder or digital
version, and make copies or backups. For more information and ideas, review the
learning activity titled “Emergency Planning Workbook”.

  • Your care recipient’s name and information. You can also include current information, like where they currently live and their likes and dislikes.
  • Names and contact information of family members, providers, and other supports.
  • Information about aids or devices your care recipient uses.
  • Legal, financial, and health-related documents. Write down their locations or make copies.
  • Dividers, labels, or folders to keep different sections and plans organized and clear.

Considerations For Your Plan

Let’s break down some areas for future planning that you can work on together. We’ll also include questions you can ask to help plan, as well as useful tips.

Discuss where they want to live in the future. Ask what’s most important to them
and make decisions that support those values. Depending on their preferences
and level of independence, options might look like moving to an assisted living
facility, group home, their own apartment, or remaining at home. Consider:

  • Amount of assistance or support needed. Do they need someone living with
    them full-time? Can they do daily tasks independently, or could someone come by to help with certain tasks? Will any supports need to be increased (or decreased) over time?
  • Funding. Consider how housing will be paid for and organize paperwork they’d need to complete for financial assistance, supportive housing options, or housing choice vouchers. You can also contact your local public housing agency here for more information. Some people also choose to live with a roommate to reduce costs.
  • Accessibility. Does the place need to be physically accessible? Does it need to
    be close to public transportation, or near work or school?
  • Community access. Is there a part of the community they’d like their home to
    be close to? For example, family, friends, day centers, or a place of worship?

Your care recipient’s ability to make decisions may change over time, so it’s
important to talk about their preferences now and make a plan. Consider the two
types of decision-making and work with your care recipient to figure out what
they’d like in the future:

1. Supported decision-making involves receiving advice or help from someone (or
a group of people), so your care recipient can make decisions independently. It can
look like:

  • Going to medical appointments together.
  • Having a shared bank account.
  • Someone explaining legal jargon, medical advice, or other options in a way they understand.
  • Someone explaining possible risks and benefits of a decision.
  • Someone helping communicate their wishes or decisions.

2. Substitute decision-making involves someone making decisions on your care
recipient’s behalf. It can look like:

  • Power of Attorney (POA). Your care recipient chooses someone to make decisions for them in one or more areas. They can also set up:
  • POA for Healthcare, where a person appoints someone to make healthcare decisions for them if they cannot.
  • Limited POA, which only gives decision-making authority to someone for a
    specific decision or for a limited period of time.
  • Durable POA, which names a person who will make decisions for them in the
    event that they’re unable to.
  • Guardianship or conservatorship happens when a court appoints a person to make some or all decisions for someone else when they cannot make decisions in those areas on their own. When this happens, the person loses all authority to make decisions for themselves in those areas.
  • Advance directives, which outline what life-saving treatment a person wants or doesn’t want, can also outline who can make decisions for them if they can’t.

Some additional tips:

  • Practice decision-making now, so they can develop skills over time!
  • Share these plans with relevant people, like healthcare professionals, family,
    and lawyers. Write them down and keep copies.
  • Discuss what kinds of decisions they might need help with, what kind of help
    they’d like, and who they want to help. Consider trusted backup people incase
    their first choice isn’t available.
  • Create a supported decision-making agreement together.
  • Re-evaluate over time if supported decision-making still works for them.

List your care recipient’s sources of money (or ones they could access in the
future). If they need support managing finances, think about who can help in the
future. Consider:

Public benefits, grants, waivers, or other programs. Determine if they qualify for:

  • Supplemental Security Income (SSI)
  • Social Security Disability Insurance (SSDI)
  • Medicaid
  • Disability grants through a charity, private company, or the government
  • Waivers (like support services waivers)

Visit your local social service office, social security office, or community action
agency for assistance.

Other sources of money. For example, employment income, trusts, insurance
policies, and assets.

Money management. Decide who will manage finances, how this will be done,
and how much your care recipient wants to be involved. Consider:

  • Does your care recipient want to manage money on their own, or do they
    want someone to do it for them? Is there a way to share the responsibility, like having a joint account?
  • Can anything be automated? For example, automatic bill payments.
  • Do they know how to budget and save their money? Can someone help?
  • Do they know how to avoid being scammed?

Consider how daily care will be continued (or changed) in the future by thinking

  • Primary caregiver. What does their daily routine look like? Who provides
    day to day care? What steps need to be taken to transition primary care to a
    different person, and who will it be? Could the person you care for participate
    in self-directed care and choose their own caregivers?
  • Medication management. Will they need help organizing, remembering, and
    taking medications? Will they need support picking up prescriptions? Are
    medications likely to change?
  • Assistive devices. Do they use assistive devices, or will they need new or different ones in the future?
  • Healthcare team. Prepare for changes in providers and healthcare team
    members. Are there any special considerations that the healthcare team
    needs to know about, like culture or language? Create a binder with important information and update it over time.
  • Other services like respite care, behavior support, therapies, and in-home
    support services and how these might change over time.

Consider activities that are important to them now and how those might change
over time. Think about:

  • Employment, volunteering, or education. Are they in school or working currently, or do they want to in the future? Will they need help applying? Are there job services agencies they can go to for support? How can they start building their skills now?
  • Social communities. What do they like to do? Who are their friends? Consider
    how they can engage in social activities independently or with the support of a different caregiver.
  • Community life skills. Consider how you can set goals to build skills now or what supports should be put in place in the future. For example: Making a doctor’s appointment and what to bring, creating a shopping list and buying groceries, withdrawing money or depositing a check, and basic household chores or repairs.
  • Transportation. How do they access their community now? Will anything need to change?

Consider This

Sometimes you need a last-minute option for temporary care. It’s good to have a list of places where your care recipient can access care. This can include:

  • Respite care.
  • Adult day programs.
  • Friends, family, or neighbors.
  • Make plans and discuss them with these people ahead of time to ensure they’re ok with your plan.
Caregiver Hands

Some tips for planning

  • You don’t have to do it all at once! Work on the plan step-by-step. It doesn’t have to be perfect and can change over time.
  • Start the conversation early.
  • Ask for help from other caregivers about their future planning experience, or ask the healthcare team about community resources or specialists who can help.
  • Use a resource locator, like this one, to find future planning professionals and resources.

Additional Resources

  • Article

    Wandering: Reduce The Risk

  • Two people and a dog riding in a car

    Quick Explanation of Power of Attorney (POA)

  • Safety Systems

    Predict The Risk: 50 Safety Checks To Do Today

  • Writing on paper

    Finances For End Of Life