Fw: (NOEWAIT) Some families I know and how they provide Medicaid waiver services for their kid

[Guest guest]

Thought this gave a nice summary of examples of living arrangements in Colorado

and how these get paid for...

Ellen

Ellen Garber Bronfeld

egskb@...

(NOEWAIT) Some families I know and how they provide Medicaid waiver

services for their kid

Some families I know and how they provide Medicaid waiver services for their

kids.

Colorado has three Medicaid waivers that are generally used for support for

individuals with developmental disabilities, either lving at home or in the

community:

EBD – Designed for those with physical disabilities, the elderly and blind –

but also open to individuals with developmental disabilities who meet the

physical disability requirements.. Includes a CDASS (Consumer Directed

Attendant Support and Services) provision, allowing parents or the individual to

hire and fire through a fiscal agent, who takes about 14-17% for admin, workers

comp, etc.

SLS – Designed to support in-home placement and support to parents and

individuals with developmental disabilities, also including CDASS provisions.

DD Comprehensive – Comprehensive residential and day services. Currently

being processed for inclusion of CDASS provisions.

As in all states, funding for these waivers is under scrutiny, and rates have

been reduced. However, services are still being provided in these ways.

My own son. After a 10 year wait, Andy (now 43) became eligible for services

under the Comprehensive wiaver. We chose the “Host Home†option, where Andy

would live in the home of a family. He has had two providers during the past 13

years, both of whom knew Andy for years prior to his living with these families,

and both of whom we have known for years. He is the only individual with a

disability living in his current (and past) home(s). He has a rich and

rewarding life, with a day program which we supervise and arrange, and many,

many brothers, cousins, aunts and uncles who are all a part of Andy’s life –

a very extended family which he loves. He and the car provider and husand will

be taking a vacation trip to Disney World in a month or so, and he has gone on

frequent trips and vacations in Colorado with his extended family. We see him

weekly, and he goes on his 3 wheeler with us, which we keep at our home. His

caregiver gets a monthly stipend and the CCB does a good job of inspections,

nursing visits, etc. The caregiver keeps excellent records, gets him to all

medical appointments, etc.

The sons of JSW. Under the Comp waiver, these two brothers live in a Host Home.

This is there 3rd home – as far as I know. They are happy, work, although one

has had some serious illnesses. Mom is very involved (dad died recently) and

sees them regularly. They are about the same age as Andy.

The son of FG – lives in the former home of the mom and dad, who moved to an

apartment. Mom was active in the legislature and got a “Family Caregiver

Act†passed a couple of years ago, which is finally being implemented, which

will allow family to live in the home and provide care. This person is

supported by aides hired and fired by him and the family. He has significant

disabilities, but the mother has figured out employment and other activities. I

believe this person is under the EBD waiver (above).

The daughter of BN. Under the Comp waiver, lives in a condo bought by the

parents for her use. Parents developed (and commercially sell) a comprehensive

computer reminder program with help screens for cooking, cleaning, etc. She

lives with a roommate the parents select , who receives free room and board.

Last I heard the daughter had a job.

There are several participants in the CO NOEWAIT contingent who use the SLS

waiver, and I will let them describe their experiences, if they so desire. Some

use the CDASS provision to hire and manage aides, even under more restrictive

funding and hourly wage caps.

I could go on and on, but I think I have given enough illustrations. I believe

that more and more CO parents are using and finding unique situations which meet

the needs of their children. Some are in apartments, others in group homes –

generally smaller. I only know of two ICF’s with 8 folks – the largest.

Others are all smaller, and not under the ICF model, but a group home model.

When I ran a day program, the agencies that caused the most problems were the

ICF’s – where people live generally without many choices, and with the

complex and intense interactions of 8 people, and ALWAYS with high staff

turnover and the inability of individuals in the ICF to form long and lasting

relationships, as my son has.

Denver