INTRODUCTION

All of us are aging. As an individual caring 

for your family member with an intellectual 

or developmental disability (I/DD) the very 

thought that you are aging can bring many a 

sleepless night asking questions such as: Who 

is going to be there to care for my family 

member when I’m no longer able? Where 

will my family member live? There are steps 

you can take now to help answer those 

questions. Where we live and how we are 

going to pay for where we live are two of the 

most crucial concerns in a person’s life. 

The first step toward being prepared is to 

work with an agency that provides services to 

individuals who have a disability. Another 

step you can take is to start talking with your 

local aging agency to learn about services for 

which you qualify. Your needs and wants are 

important too. The following information will 

give you an overview of how agencies can 

help you, what types of housing are available, 

and information on a financial mechanism 

that will allow you to leave resources for your 

family member with a disability. 

WHAT KIND OF HELP CAN AGENCIES 

PROVIDE?

Agencies that provide services to people with 

intellectual or developmental disabilities offer 

a wide range of services.

Home care support 

• Respite 

• Housekeeping assistance

• Emotional supports

Physical barrier removal 

• Addition of ramps 

• Modifying doorways, bathrooms, kitchens

• Help finding affordable, safe, accessible 

housing

Transportation 

• Assistance accessing public or non-profit 

senior and/or accessible vans or buses

Senior service and social event access

• Provide information on local senior 

services

• Offer support groups 

• Work with theaters, performing arts 

centers , etc. to provide free or reduced 

entrance fees for performances

• Work with your Aging agencies to 

provide joint social events that both you 

and your family member can attend and 

provide staffing to give you a break

Counsel/advocate on financial aid & 

benefits

• Help navigate the social service system 

and resolve problems with agencies.

• Advocate for obtaining services for which 

you and/or your family member are 

eligible

• Assist in obtaining Medicaid 

• Provide materials or workshops on 

financial planning (e.g. guardianship and 

trusts)

• Help with transition planning: stand-by 

Caring for Someone with Developmental Disabilities
guardian, health-care proxy, and living 

wills

MEDICAL/HEALTH SERVICES ACCESS

• Help in obtaining appropriate medical 

services for both caregiver and care 

receiver 

• Provide list of specialists for children and 

adults with disabilities

• Aid with transition planning and your 

future health needs, i.e. dementia care and 

frailty

• Provide support groups and counseling for 

emotional needs

HOUSING OPTIONS

You or your family member with a 

developmental disability may find your 

current living situation is no longer suitable, 

or that you need options for the future.While 

working with an agency keep the following 

principles in mind:

• Involve the person with a disability in the 

decision-making

• Consider options that maintain the family 

unit (e.g. supportive in-home assistance, 

merging households with other family 

members)

• Ask for as many housing alternatives as 

possible and research your community’s 

options.

Home Ownership – gives the individual the 

most control over living arrangement. Inhome services are provided through 

healthcare agency, DD provider agency, 

roommate, or community and family 

supports.

Reverse mortgages – A homeowner sells 

their home back to a bank. The bank pays the 

homeowner each month over a set number of 

years. At the end of the agreement the bank 

owns the house. This option gives 

homeowners a monthly income, while being 

able to stay in their own home.

Renting or Leasing – Most communities 

have market rent or subsidized apartments. 

Information can be obtained from state and 

local governments and housing agencies, 

housing advocacy organizations, friends, 

relatives, landlords & Realtors.

Home Sharing – Two or more unrelated 

persons sharing housing and expenses.

Supervised Apartments – DD agencies 

support individuals in their own or shared 

apartments. Apartment mate may or may not 

be an individual with DD.

Family Care or Foster Care – individual 

lives with another unrelated family. The 

family receives monetary support from state 

DD agency.

Group Homes – generally certified by 

government agency and operated by state or 

private provider.

FINANCIAL PLANNING

Planning for the future and ensuring that you 

and your family member are receiving all the 

benefits available can reduce stress now and 

prevent worry about the future. Below are 

things to consider.

Medicaid transfer penalties 

• Transferring assets to a disabled child 

may disqualify the child for benefits.

• Consider using a Special or Supplemental 

Needs Trust. Make sure to consult an 

attorney that is an expert in this type of 

trust. 
Obtaining Federal Benefits

• Enroll you and your family member with 

a disability in all federal (and local) 

benefit programs for which you are 

eligible.

• Parents must view their adult child with a 

disability as financially separate from

themselves.

• It is the adult child’s income, not parent’s 

income, that is reflected on a Medicaid 

application.

For more information on aging caregivers 

caring for a family member with an 

intellectual or developmental disability please 

visit: http://www.rrtcadd.org . 

Information provided in the fact sheet was 

adapted from materials submitted by the 

Center on Intellectual Disabilities, University 

of Albany, Albany, NY.

For more information about ACL

U.S. Department of Health and Human 

Services, Administration for Community 

Living, Washington DC 20201

Phone: (202) 619 – 0724

Fax: (202) 357 – 3555

Email: ACLinfo@acl.hhs.gov

Web: http://www.aoa.gov